If I’m Not Sorry, Why Are You?

Upon hearing the story of what happened to me at age 28 (getting sick; the beginnings of physical disability), most people look at me with pity in their eyes and sympathy stitched on their faces and tell me how sorry they are. I understand that this is a response born of compassion and of a desire to comfort. But it also stems from the inability to relate; ignorance of how this part of my life’s experience has played out and affected me; and misunderstanding of my feelings concerning my illness and disability.

You see, I am NOT sorry about becoming ill and disabled. And if I’m not sorry, why should you be? It’s true my life changed completely back in 2009 – all the dreams, goals and plans I’d had for myself fell out of reach; all the hard work I’d put into earning my Master’s degree and being a Special Education teacher became meaningless and futile; life as I’d known it for 28 years disintegrated.  At first, I admit to being full of self-pity. I felt wronged by life; a victim of cruel circumstances. I felt depressed, angry and hopeless.

One evening, I was crying out through sobs and tears, “Why me?!” over and over. All of a sudden, a new and seemingly alien thought occurred to me – Why NOT me? I was perfect for this situation! I knew how to modify my environment, sometimes with ordinary, household items; I knew the services and organizations that were at the disposal of the local disability community; and the whole time I’d thought I’d been teaching, I’d been the student – the children I’d worked with had shown me how to be determined, motivated and to enjoy the life I was given. I could choose to wallow in grief and pity or I could embrace the new circumstances of my body, my life and do my best with what I still had.

Since then, I’ve gone through many stages physically, mentally, emotionally and spiritually. I’ve learned a lot about myself, about how strong I am, what I’m able to handle. I’ve learned new coping skills. I’ve learned to accept my illness and prognosis and have arrived at a peaceful place with it. I’ve learned how to use my voice to advocate for myself and now, for other parents with disabilities. I’ve learned how to educate and be effective in my community. I’ve learned that my abilities and strengths far outweigh my limitations and weaknesses.

I’ve also been brought so much closer to God. I didn’t even believe in Him back when I was diagnosed, but can look back at that night and get chills realizing He loved me enough to be in the ER with me that night, regardless of how little I thought of or felt about Him. The director of the ER had written his doctoral dissertation on my extremely rare neurological disease and was able to diagnose me which not only brought back some of my eyesight and saved my life, but ended the 3-month-long search for what was going so wrong with my body. My faith is strong these days and carries me through the difficult times, the scary times and even the times when doubt may creep in just enough to cause worry lines to form on my face. I know He’s watching over me and loves me very much. He doesn’t see my failing body, my medical equipment or the awkward way I sometimes wander through the days – He sees my heart. To Him, I’m perfect. And, most days, I’m able to see myself through His eyes.

Because of getting sick and losing so many abilities of my body, I’ve been able to find gratitude which I honestly didn’t have much of before becoming disabled. I’d spent 28 years taking every moment and each movement for granted. Now, I savor each day and rejoice in what my body is still capable of doing. This has been yet another gift of what so many people seem to view as ‘a tragedy’ in my life.

Please don’t feel sorry for me. For 28 years, I lived in a healthy, able body but had a broken, damaged and deteriorating spirit. My outlook on life was negative and my self-esteem near non-existent. Since my diagnosis, the situation has reversed itself. Now, my body doesn’t work so well, but my heart and soul are overflowing with joy, peace, contentment, self-confidence and a zest for life. I’m grateful for each day and enjoy every moment. How could I be sorry about that?!

Letting Go of “I’ve Got This!”

For so long, I’ve prided myself on my independence, on my ability to remain living alone with my child, on my capacity to raise my daughter with little outside help. I think having so many movements and physical activities stripped from me has given me a higher regard for that which I’m still able to do. I revel in being able to do things for myself whether that be larger-scale household chores like laundry or smaller things like opening doors for myself. I often tell people in public who try to be helpful (when it’s not needed) that “I’ve got this.” It’s almost been a mantra of mine since getting sick and relearning life and how to live it. No matter what I may look like on the outside, the inside of me is fully functional with a raging ego! Haha!! Using a cane? I’ve got this! Walking with a rollator? I’ve got this!! Self-propelling a wheelchair? I’ve got this!! Driving around in my power chair?? Yep. You guessed it! I’ve got this!!

However, recently, many activities of daily or weekly life have become either quite difficult or impossible for me to accomplish. Laundry has piled up – dirty laundry to be done (because it’s difficult to navigate the 2 steps up & down into the garage, tiresome and painful to complete this task and hard to take clothes out of the top-loading washing machine and front-loading dryer) and clean laundry to be folded (because this also causes a great deal of pain and is taxing on my body, leaving me feeling drained of all energy). My kitchen needs stocking, but going to the grocery store by myself is nearly impossible unless I’m buying only one or two small, lightweight items. I haven’t cooked a meal in weeks because my kitchen isn’t accessible to me so I’m required to stand to prepare food – standing can now only be done in short 2-3 minute periods and even Hamburger Helper takes at least 10 minutes!! Even dishes can seem insurmountable – yes, I can sit on a stool and wash them, but this, too, seeps energy from me and hurts my arms, hands, shoulders and neck (no, I don’t own a dishwasher; there’s no place to put one in any case).

I have a friend that comes and cleans. She makes our beds as well, since I’m unable to do so. But, I’m slowly realizing I’m soon going to need more than that to continue living alone, raising my child. One of my friends helps me grocery shop – she pushes the cart, gets items that are out of my reach and picks up things that are too heavy for me. I always feel loathe to ask her for assistance, but it’s coming to a point where I’ve got to get over that.

Lately, I’m realizing I may not “got this” anymore after all. Weeks ago, this prospect scared me. It left me feeling weak, needy, burdensome and worried about my future. Today, out of nowhere, came the thought that letting go of my independence is being the best mom for my daughter. If I want to continue to raise her, I must admit I need the help… and I must accept that help. Not only will it allow me to raise my kid, but it may teach her to ask for and accept help when she comes to need it in her future. She may learn to accept her circumstances much easier than her mom, who balks at admitting I can’t make a bed!! If I want to live alone with my little girl and raise her to the best of my ability, I must do so with outside help… and that’s okay.

I once heard that no one is ‘independent;’ we were created to be ‘interdependent.’ I think I’m beginning to understand that now. Maybe I don’t “got this”… but maybe there’s a WE who does!!

Why Play Dates Make Me Nervous…

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My daughter is five and has quite the social life! She’s made many friends from various facets of her life and my life combined – school, church, sports and recovery meetings. She’s the type of child who writes an invite list to her birthday party that’s longer than her Christmas wishlist. Needless to say, she is asked to join friends for play dates on a pretty regular basis.

This is where Mommy becomes more of a detective than parent. This is when I bust out with my list of questions for the parent who’s house I’ve never been to. I have to consider everything about the structure of their home and it’s accessibility to me before I can even decide if we’re able to go or not. Are there stairs leading into their home? If so, are there hand rails? Is the house all on one level? Are there carpets? Rugs? Toys or clutter of any kind in the middle of the floors that I’d need to try to navigate around? Is there an animal that might jump on me, causing me to lose balance? Or could that animal be so small and fidgety that I trip over them or can’t process all their movements in order to walk around it? What’s the bathroom like? Is there somewhere I can hold onto while in the restroom?

If you think this list of questions is long, think also of how I feel asking all of them: For starters, I never truly trust the answers that are given. I may trust the person completely in every other way, but able-bodied people do not have to think like I do. I myself never thought this way until I became disabled, so I surely can’t expect others around me to understand my needs immediately. I get nervous that something’s being left out: that small step up into the foyer; those 2 tiny stairs up the sidewalk that the person forgot to mention and oh, there’s no railing there either; the fact that the bathroom is on the second floor. I become concerned my daughter will be so excited the day of her play date yet when we arrive at her friend’s house, there will be some barrier preventing me from entering the home and we’ll have to either move to our house (which is way less exciting because other kids’ toys are always the most fun to play with!) or reschedule for another time and decide where to meet that’s accessible for me. And, there have been those instances where we’ve not made it into the house, even though I asked the litany of questions. I also feel guilty and can’t even pinpoint why – some of it is because I wish that we could just go like other families do; I wish I could be a ‘normal’ mom for my little girl. I have guilt when we must meet at our house, knowing my daughter enjoys playing with toys that aren’t hers. Yes, kids often bring toys from home to share, but it would be nice if my child could get out of our home more.

I feel like I’m interrogating the other parent; as if I’m making sure they have the “right” kind of home. I worry they’ll be insulted by all my questions – here they are, treating me like any other mother (which I deserve to be treated as, by the way) but I’m asking them tons of structural questions and focusing on my differences. I feel like it may seem I’m making a big deal out of a simple play date – “Wanna come over and play?” It’s a ‘yes’ or ‘no’ question! Not an opportunity to ask for the blueprints of the person’s house!! But, it’s also what I must do in order to know what my answer will be. There’s a small part of me inside that whispers quietly, “This is okay. Don’t feel guilty. Don’t stress out. God didn’t make a mistake in making you nor making you a mom.”

That wee small part of me also insists that it’s just a play date. The important part isn’t WHERE the playing occurs but the HOW (with enjoyment and happiness) and WHY (because my daughter is a wonderful, funny, compassionate friend) and also that it IS happening. When she’s twenty, I’ll ask her if she remembers having play dates with friends – I bet her answer will be along the lines of “Oh, yes! I had lots!” instead of “Yeah, but they were always at my house.” She’s got the best attitude about everything… even though her mom’s attitude can be saturated with worry, anxiety and guilt! Guess that’s just another thing that proves I’m like any other mama!

When my Limited Body Was No Match for the Limitless Love of my Daughter

My daughter is only allowed to watch a small number of television shows (yes, I am one of those parents). One of her favorite shows is Paw Patrol; I don’t use the word favorite lightly – she owns Paw Patrol dolls, pajamas, figurines, vehicles, stickers and don’t forget the light-up tennis shoes!! Nearly 4 months ago, I saw an advertisement stating that Paw Patrol Live! was coming to our city for the first time ever. I jumped on the chance to buy tickets but was faced with a decision: I usually use my power chair in public and especially at big events like this; it’s safer for me and ensures that I’m comfortable during the show but also don’t suffer pain & fatigue afterwards. However, this particular theater only has wheelchair seating in the very back – WAAAAAY back. Should I get tickets in the orchestra section where we’d be close to the stage and have a great view? Or should I get seats in the wheelchair section like I normally do? It seemed like a difficult decision to make… for about 2 seconds. I wasn’t going to Paw Patrol Live! for me – I was going so my daughter could be filled with amazement, joy, excitement and so that I could witness these feelings as they melded across her face. Yep, orchestra section it was!! Besides, I’d just ordered a sturdier, safer cane and was still walking pretty well for the most part. Some physical pain & discomfort were a small price to pay in order to see my daughter enjoy the show up close. I thought, 4 months ago, “I can do this! She’s worth it!”

Did I mention that was 4 months ago? Four long months in which my body regressed further in unexpected haste. When the day of the show came, I was walking very little, even at home. The only place I don’t take my chair to at all is a meeting house because I’ve yet to measure the doorway to make sure it will fit. I hadn’t realized I’d be this further into my illness & disability when I purchased the tickets. I’d felt so sure of myself then; when showtime came, I was much less confident.

Tickets in hand, excitement in our hearts, smiles on our faces, we went to the theater. My mother drove us so I didn’t have to deal with parking. We walked into the lobby where there were NO seats available! Not that people were sitting in them – the lobby was simply void of benches or rest areas!! I stood with my daughter in line to enter the theater and gave myself an internal pep talk, trying to feel capable of the physical task before me. When we got into the theater, I realized I’d gotten us FANTASTIC seats!!! But fantastic seats were more than halfway down the section and in the middle of the row – go mom! My sweet little girl waited so patiently as I made my way down the steps to our row, urging me to “go slow,” “don’t let go of the railing” and to “be careful.” I made it!! Then we awkwardly walked to our seats (well, she walked a lot less awkwardly than I did; I took out several adult feet and some small toes with the tips of my foot base!).

The show was AMAZING (and I strongly urge families with young children to see it)!!! Our seats were INCREDIBLE!!! The joy and awe on my little one’s face was worth every step cautiously taken!!! We had a BLAST!!! 

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Afterwards, I made it painstakingly up the steps, back out into the lobby to wait in a line for slightly overpriced merchandise (because we needed one more Paw Patrol doll, of course!!) and then waited on my feet for nearly 15 minutes before my mom pulled up to whisk us away. My lower body literally felt like it was on fire; I ached like I hadn’t in a long time; my toes & feet were numb but tingling painfully yet we had the time of our lives and inside, I couldn’t have felt better!! I don’t know if I’ll be able to do something like that for my daughter again and if so, for how long. But it was done the other day and I’ve cried while thanking God for the ability to walk, stand and go up & down stairs even though it hurt and was hard. I know one day, I wont be able to do any of that any longer so I’m grateful for every movement I CAN make and every ability I still possess.

My ability to love completely outweighed my inability to move like I once did – how can I not be thankful for that?!?!

How Being Turned Away by Other Moms in Wheelchairs Affected Me

I had an experience a while back that rattled me not only as a person, but especially as a mother dealing with physical disability. I’m hoping by stating my thoughts, opinions and feelings about the situation that I can bring awareness to the very population who I’d assumed understood compassion and inclusiveness in the first place. Perhaps this response will get them thinking and, better yet, bring an outpouring of understanding to everyone, even those without a disability.

I don’t have personal contact with other mothers or parents with disabilities or chronic illnesses. Months ago, I decided to reach out via the internet. I found a group (whose name I will not mention) that advertised as a place for mothers and mothers-to-be who’re in wheelchairs to band together, sharing ideas, tips, experiences and the like. I submitted a request to join and to my dismay an administrator contacted me, explaining that the group was for women with spinal cord injuries (SCIs) only. I told her okay and went about trying to find another place where I’d be welcomed. I finally found a group for mothers who use wheelchairs that welcomed me and have embraced me. The women in the group have a wide array of limitations as well as causes for why they’re in wheelchairs. I’m happy to be a part of their group and find it extremely helpful and supportive, even when advice, questions and experiences don’t apply to my situation or I don’t understand the other women’s needs very well due to the contrasting nature of our disabilities.

When I was told I couldn’t be in the group for mothers with SCIs, it made me feel rejected; I didn’t have the ‘right kind of disability;’ I was excluded when what I needed and longed for was to be included, to share in similarities rather than focus on the differences. At the time, my mobility was worsening and I was desperately needing to find support, encouragement and hope among other moms who’d understand how what was happening to my physical body was effecting my insides, my feelings, my thoughts, my fears.

So, why would it matter how I landed in a power chair? Maybe the women with SCIs had experienced an immediate and sudden life-altering change to their bodies and capabilities whereas my changes consist of a slow regression and breakdown in abilities in which I’m constantly having to adjust to. But haven’t we all had to grieve the loss of our old selves? Our old bodies? Past abilities? Haven’t we all had to work hard to overcome the challenges, both physical and mental, that have been placed before us? Don’t we all have the same initial worries about caring for our children; caring for ourselves long-term? Aren’t we all more alike in the places of ourselves that can’t be seen through the eyes? Maybe our bodies, our limitations, our disabilities are different, but can’t we find our emotions reflected in each others’ eyes?

To be honest, I was stunned and hurt when told I could not join the group. The very people that I was reaching out to so I could find a place to belong, to seek comfort, to be given support were telling me I wasn’t going to get all that from them because I wasn’t like them; couldn’t understand, relate. The population of women who I would’ve assumed believe in inclusiveness were turning me away. Wow. I hope one of them will read this. I hope they’ll stop and consider the bond we could have shared had they not been prejudiced in believing I wasn’t one of them. I hope they’ll be able to identify the discriminatory behavior that was displayed towards me (and likely other moms as well). Even if none of the members of the group read this, I hope you’ve gotten something out of it. I hope you’ll speak out against exclusivity even if you’re not part of the disabled community. Bring one another close; embrace everyone even if the only things you see are the differences; be supportive of the person who reaches out a hand to you, asking for help or guidance. It is our responsibility to allow people in, especially during their time of need – so that when we need someone, there’s a hand available to grab onto us.

Why is Mama Modified? (Getting to Know Me)

There’s a saying a like: I plan; God laughs.

 

This certainly feels applicable to my life. I had everything planned out; thought I knew the direction I was going; assumed my goals were attainable through hard work and dedication; fancied myself the director of my own show. I was finishing up my thesis for a Masters degree in Early Childhood Special Education with an emphasis on the medically-fragile/low-functioning population. I was teaching for the public school system in my city as a Special Educator. The unraveling of the thread of my future began with a headache. I’d never been prone to headaches before, even when sick. The headaches persisted and worsened. Every day brought on more pain. Over-the-counter medications were ineffective in treating the throbbing that traveled from the base of my neck to my eyes. Then came the pulsing sounds; a constant whooshing noise that matched the rhythmic beat of my heart (I would later find out I was hearing my own spinal fluid sloshing around in my brain. Pretty frightening!). I had no idea what was causing this new development and was already beginning to make the rounds of various doctors and specialists to try to find out what was happening to my body. No one had an answer for me, even after CT Scans and MRIs, all of which were normal. I was given multiple narcotic pain medications as the headaches increased in intensity to what was assumed to be migraines. Even taking dilaudid and morphine did nothing to lessen my agony. Then came the day I awoke without peripheral vision nor the ability to turn my head at the neck. Over the course of 2 1/2 months, my condition worsened; my speech became slurred as if I’d suffered a stroke; movement of my limbs was difficult; my tunnel vision regressed to mere pinpoints of sight as I stared at the faces of doctor after doctor, begging for a diagnosis, a treatment, an answer.

I’d already taken leave from the school where I taught and had stopped writing on my thesis. Finally, the night came when I went completely blind. That was the turning point. I was taken to the emergency room of a local, well-known hospital. Again, the ER staff took a CT Scan of my brain which came back with no abnormalities though what I was experiencing was far from normal. The director of the ER was called in. Although it seemed that he was the only new person to enter the room, I would soon realize that God had stepped in as well. This doctor had written his dissertation on an extremely rare neurological disease called Idiopathic Intracranial Hypertension. He performed a lumbar puncture to gauge the cerebral-spinal fluid pressure – the only diagnostic tool used to recognize IIH. Normal CSF pressure is between 8-12; mine was 49. Six vials of spinal fluid were drained via the LP, and I immediately gained tunnel vision back, though it would take an additional 1 1/2 years before my peripheral vision returned. I began seeing a neurologist and neuro-ophthalmologist and taking a medication that would help my body rid itself of the fluid. After one year on the medicine, my IIH went into “remission.” However, my journey into a new way of living was not over.

There is no known cause of IIH nor is there a cure. It affects only 1% of the world’s population. For a reason unknown to the plethora of doctors and specialists I’ve seen over the years, after 28 years of working efficiently, my body stopped absorbing its spinal fluid, causing it to build up in and around my brain and spine. I was fortunate to have responded to the medication; to not have suffered a seizure or stroke due to the increased spinal pressure; to not have had a heart attack as my body worked over-time to compensate for the increased pressure in my brain and spinal column; to gain my full sight back with only a tiny blind spot in the peripheral of my left eye; to not have required surgery on my eyes or to place a shunt in my brain to drain the excess fluid; to not have died. The lasting effects of the IIH for me were to be a physical regression of mobility, coordination and balance. At the time of my diagnosis, I was a heavy drinker and was actively engaged in an eating disorder that left me malnourished and dehydrated – a combination of maladies that my brain and body simply could not deal with. Shortly after my initial diagnosis, my spinal column began to deteriorate; a disorder that mimics degenerative disc disease. I’ve since been diagnosed with several other neural-muscular disorders as well as neuropathy in all four limbs. Over time, I’ve lost (and will continue to lose) my ability to walk and perform various other physical activities that my once healthy, able body was capable of.

I had to withdrawal from the graduate program a mere 3 months prior to graduation. I’d been so close that my name was already printed in the programs for the ceremony – a ceremony I did not attend. I became dependent on government assistance; something I’d never foreseen myself doing. I had a home-health nurse and physical therapist. When I was able, I went outside my home for PT and struggled to walk again. I actually walked for 15 months without the use of any aids until I started falling again. A sort of backward cycle began – I’d gone from wheelchair to rollator to crutches to a cane and now was reversing the order; in need of a cane one day and before long, back on the rollator before sitting down again in a chair. I now use a power chair about 80% of the time. The cane I use to walk around the house and travel short distances has a wide foot-base to keep me as steady as possible. I’m not able to self-propel any longer but keep my manual chair for emergencies.

My plan was to become a teacher. Instead, I’d unknowingly been a student of the children in my classroom. Because of them, I’d witnessed strength, determination, motivation and perseverance and knew I could apply it to my recovery. I’d also learned about all the different programs, services and assistance for the disabled community. I’d helped children and their families modify their environments in order to be more accessible and accommodating depending on the level of care needed.

My plan was to live out a life I was in charge of. God simply smiled and showed me how to be grateful for every moment and each movement; to rejoice in the things I’d once taken for granted; to rely on Him instead of myself. I’ve also been blessed with an amazing daughter! Before age 28, had someone asked me if I could live my life as a disabled person, I would have said, “No.” Had anyone asked if it were possible for me to be a disabled parent, my response would again have been, “No!” But God would’ve giggled and said, “The answer is yes! You can do ANYTHING with My help!” And that is the correct answer!!

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*Post can also be read at: https://rollingwithspinabi7.wixsite.com/take2

What My Father Taught Me About Invisible Illness & Making Assumptions Within the Disabled Community

An entire month has gone by since my last post. I will not apologize for that – On December 4th, my dad passed away suddenly after a moderately short battle with a chronic illness. The week of Thanksgiving, my family was told he was in complete organ failure; his body was filling with fluids released by his liver; his hernias had shifted & fluid was going into his lungs – we knew he was not going to be with us for more than a year, but were not prepared when he fell, causing his body to shut down. He died quickly, and I’m thankful he did not have to suffer more than he already was.

In reflecting on my dad’s illness and the effects it had on his body, I realized I’d made quite a few mistakes during his last year – especially within the months leading up to his death. When people see me park in handicap parking, it is obvious when I get out of my van that I’m honestly, legitimately and legally permitted to park there. When I use designated stalls in restrooms, no one questions my necessity for those accommodations. My illness and my disability are not invisible. Rather, they are glaring and direct.

My dad, however, did not use adaptive mobility equipment until one month prior to him passing. At the end, he had trouble walking and required the use of a rollator. Before that, when he’d park in a designated spot, here is what people saw: An obese man with no clear physical limitation walking into an establishment. There were times, early on, that I (embarrassingly enough) bristled when I saw him park in handicap parking. Before knowing what was wrong with my dad, I thought he used obesity as the criterion to gain certain accommodations – I hate that I thought these things and am loath to admit them, but am sharing in hopes that someone who reads this will better understand my overall point.

My dad was actually not obese. He had several large abdominal hernias and as I’ve previously stated, his body was filling with fluid. If a person were to look at his face, arms, legs and neck, it would be obvious that he was in fact thin. The “weight” he carried was solely in his torso. Furthermore, to a stranger it may have seemed that he walked just fine. But, to those of us around him, we’d watch in horror and helplessness as each step caused his breathing to become more and more labored (recall the fluid build-up in his lungs).

There are times that people make assumptions about what it means to “look sick.” Assumptions are also made about what qualifies as a “disability.” I’ve heard people grumble about “that heavy-set woman using the handicap stall” or “the fat man who just needs to lose weight so he wont be disabled.” It’s not that those exact thoughts have come into my head, but I’ve already admitted that I myself, as a member of the disabled community (and one who doesn’t need to carry a membership card since I’m rolling along through life) have also wondered why a seemingly healthy and able-bodied individual is using a space or stall or other modification meant for ‘us.’ This is plain prejudice (yes, I admit that!). It’s stereotyping, generalizing, assuming and jumping to conclusions about things I have no right to nor expertise in!!

Whether you are chronically ill, disabled or healthy and able-bodied, I ask that we all cease to pass judgments on people who use services for the disabled community. There’s usually a lot more to the person’s story than their body is able to convey to our untrained eyes.

 

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In Loving Memory of my dad, Rob Sasser, who taught me a lot, even when he didn’t know it. May 12, 1952-December 4, 2016