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

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More Mama Modifications

So this arrived today:

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To you, it may just be a cane with a foot-base. But to me, this cane represents many aspects of my adapting to new challenges. It represents my letting go of pride and ego – it took me weeks to finally hush the voice inside my head that insisted I’d look like an old lady; it finally occurred to me that acquiring this type of cane would not turn my hair cloud-white, cause my shoulders to stoop or wrinkles to set creases along the planes of my face!!

This represents my acceptance that my body’s gotten a tad worse; balance is more difficult; walking can be precarious at times. And if my old cane fell while I was alone? Well, the challenges that caused me were well worth taking a closer look at my need for more efficient safety. There’s a grieving process that occurs each time my body presents me with new limitations. Breaking through the denial can be cumbersome and unpleasant. Yet, it’s necessary if I’m to continue living the life God’s blessed me with. Therefore, this cane (or any new mobility equipment) is symbolic of the respect and love I have of myself since I’m taking steps necessary to stay safe and well.

It’s not just me, however. There’s a wonderful, caring, funny, helpful, smart 5-year-old who’s become increasingly worried about me falling… and possibly dying. As many know from my previous blog post, my father passed away after falling in his home. My daughter knows I’m prone to falling and has connected his death with the possibility of mine. Lately, I’ve watched her struggle to contain her anxiety as she watches me walk about the house. She’s wanted to review the plan we have in place in case I do fall. We’ve practiced “dialing” 911 on the house phone and on my cell phone; what to say to the dispatcher; the fact that I may be taken away in an ambulance; whom she might stay with if I were to need overnight care for her. It’s been heartbreaking, as her mom, to need to keep reiterating that her grandfather and I have different illnesses; that mine will most likely never kill me; that I have great doctors who monitor me and I take my medicine; that even if I do fall, it doesn’t mean I’ll die, too. Telling her she doesn’t have to worry about me does little to alleviate her fears. Walking with an aid that keeps me more balanced and stable can do much more to relieve her stress.

To her, my cane represents less worry about her mom. It represents the ability to not have to agonize about emergency-plans. It symbolizes a more care-free, happier childhood for her. As a mom, that’s priceless and something I’d be willing to adapt to any modification for her to experience!!

For both my daughter and me, my new cane represents us moving forward in life – literally and figuratively. We are always adjusting, adapting and modifying our lives to fit with what my body can handle at any particular moment. As a parent, there’s a guilt that she’s being dragged along this path with me. Yet, I see it’s made her much more flexible, accommodating and accepting of changes that pop up in her world, from school to play dates. If you see us out-and-about, we’ll be walking a bit more slowly and much more carefully. But chances are, we will be quick to smile and share in the joys of life with you!! So, please stop and say hello… and don’t worry about me falling!!

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

Not All Spaces Are Created Equally

Yesterday, I was out running errands and stopped at one of the stores on my list. There were two handicap parking spaces available, but I couldn’t park and do my shopping. Why? Because I drive a wheelchair accessible van and can therefore, ONLY use VAN accessible spaces. The store had one van accessible space, but it was being used by a compact car.

Many people do not realize that there is a difference between regular handicap parking and handicap parking that’s accessible for vans. Before I began using my power chair, I myself was guilty of parking in any open handicap spot on the days I needed one, unaware that if I parked in a van accessible spot when there were other spots available, I was potentially blocking entry or exit into that establishment for someone who used a van.

The tale-tell difference between the two types of handicap parking is the width of the slanted lines next to the parking space. In order for a spot to be van accessible, the lines must be wider than they are for a typical spot. The reason? In order for me to exit my vehicle, I must have room to lower my ramp/lift (most often found on the right-side of the vehicle) and then have more room to roll completely off the ramp/lift. This is especially important to me as a parent with a young child, who I must keep safe.

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Drivers of modified vehicles CAN NOT use a regular handicap parking spot!

Back to my errands: I pulled in a spot directly across from the parking space I needed and waited…

and waited…

and waited – a full 10 minutes!

Finally, the lady came out of the store and began to unload her groceries. As she finished, I pulled out and signaled that I was waiting for the space. The lady was elderly and when she noticed me, she wagged her finger at me while giving me a disapproving look; no doubt believing I was ‘too young’ to need that space. She got in her car and proceeded to put on make-up, read mail and make me wait an additional 8 minutes! Thank goodness I was spiritually fit and sat there patiently – no fingers flew up; the window stayed up; my mouth stayed shut and I didn’t even toot my horn!! She finally pulled out and drove past me slowly, shaking her head.

If you must use a handicap parking space, bear in mind the next time you’re out & about, that if there are other spots open, to use them. Please leave the van accessible spaces for those of us who need the extra-wide slanted lines in order to safely exit our vehicles, some of us with our small children. Thanks!

Rollin’ Forward

So, welcome to my new website! I’m really excited and hope that you as readers/followers and I will gain much from this site.

The decision to begin a website came about as another transition I’m making into the world of disability. Since becoming sick 8 years ago, I can’t tell you how many times I’ve cycled through the grief process. I’ve had to adapt to and accept each new phase of my illness & disability as my body’s steadily declined. I’ve coped through humor, faith and hope and am now entering a different phase – one of desire to educate & advocate, giving another voice to the disabled community to promote awareness and gain accessibility.

As a disabled parent, I find there are limited resources for my population. Public places that I’ve needed or continue to need access to do not meet ADA requirements due to what I consider to be inconsiderate & insufficient regulations. Some places claim ADA accessibility but are not, leading me to believe that businesses are not strenuously monitored or regulated.

My future goals are to advocate for stricter and more suitable ADA laws by lobbying at the Congressional level. I’m also looking into the Miss Wheelchair Tennessee pageant, as that would broaden my platform and help me reach more people.

I look forward to continuing to blog about being a parent with special needs and am excited about using this site to further awareness & education for all of us in the disabled community! Feel free to share your comments with me!! And, thank you for visiting my site!!!

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I wheely need an icon!!

I have an android phone but wont drop the brand name nor the phone carrier I use in this post…

Several months ago, my phone updated and afterwards, there were tons of more choices of icons I can send in my text messages. I can now choose from 6 different skin colors when giving a friend a “high-five” or “thumbs up” or show that I’m “clapping” my hands. There are hundreds of flags representing all these different countries (most of which I can’t identify by their flag, to be honest!). There are lots of sports represented and activities and emotions. There are about 8 pages of vehicles and gay & lesbian couples are now included in the ‘people/family’ section.

With all these new, various and exciting choices there’s one thing that has not changed – there’s no representation of people in the disabled community except for the old, tried-and-true international symbol for ‘handicap’ – that simple stick-figure sitting in a manual chair over a blue background. Why?? Are we afraid?? Are we still stagnant in attitude, thought and consideration??

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What if I wanna shoot off a text about how I just took off at 6 mph in my power chair, leaving so-and-so behind in my dust? Where’s a colorful icon of a female in a wheelchair with flames shooting out the back? Wouldn’t that be fabulous!?! How about amputees? People who use crutches? Canes? Orthotics? Why are there a vast variety of cultures, religions and races symbolized but not the equally vast plethora of disabilities?

I’ve got no answers. Only gripes. No solution. Only grumbles. I would tell you that I’m ready to roll over somebody’s toes, but I wouldn’t be able to include a pic of a wheelchair rolling away from a person grabbing their foot in obvious pain!! 🙂

Limitless!!!!

Last week, I was blessed with one of the most touching gifts I’ve ever been given – an accessible van!!

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It’s true that this vehicle will help me be able to return to work, but it means so much more to me than that…

As a mom, this van opens up a whole new life-experience for me and my daughter, who is almost five. We’ll now be able to do things that other families do. We’ll be able to get out and go without so much planning.

Because here’s the truth: I wrote a blog post called “I Am Any Mother” and I stand by that, but there are times my emotions, my thoughts probably vary off the path my able-bodied friends’ feelings and thoughts take. I’ll be on FaceBook and see pictures of my friends with their children at the zoo or a theme park, and while I may ‘like’ or even ‘love’ the pic, inside, I’m breaking. I’m feeling that guilt that only I as a mom with a physical limitation can feel. Even though my disability isn’t my fault, I feel responsible for making sure my child suffers no consequences due to my physical circumstances. I long for her to have the most “typical” and joyful childhood possible. Yet, up until last week, we weren’t able to simply get in the car and go to the park, zoo, a theme park or even on a road trip. I had no way of getting my power chair out of my home. So, I’d see these pictures of smiling kids & proud parents and a part of me would grieve all over again for the loss of my mobility. I’d grieve for my daughter and the losses she faced as a child because of my condition. Even though she’s not aware of what she misses, I’M aware and I hurt because of that awareness. It is painful; it’s a dull ache in my heart and an intermittent throb in my head.

So, the gift of this van that will allow me to get out in my power chair is the greatest gift possible for the Mommy-Daughter team that we are because it’s also a gift to her, allowing her the freedom to enjoy ALL that life has to offer!!

If we’re FaceBook friends, I suggest you be on the lookout – I’ll be posting my OWN zoo pics soon!!!

DISsin’ My ABILITY

When we, as a society, think of the word “minority,” what comes to mind might be groups of people such as African Americans, Jews, Homosexuals… But, in order to think of these groups of people as minorities, we must recognize them, be aware of them.

There are moments I feel I fall below the totem-level of minority into a classification of “ignored” or “unrecognized” or worse – “invisible.” As a parent with special needs, I am constantly pointing out structural flaws in the buildings and parking lots of the places my daughter and I frequent. I find myself advocating for the consideration of parents with special needs since our country (USA) is singularly focused on parents of special needs children. 

Most recently, the gym my daughter attends made changes to their facility. Their aim was not only to expand, but also to become “handicap accessible”Oh, those 2 most misunderstood words!! They’ve added the parking spots and the entrance (yippee!!) yet when I inquired where the elevator to the mezzanine was, I was told there isn’t one. I’ll be the only parent allowed to sit downstairs inside the gym. I do not see this as a privilege; I see this as yet another instance where my child is vicariously singled out due to my physical condition. I long for the days when she and I will simply be ‘a part of’ not ‘apart from.’

The second situation to arise within the past couple of weeks has been at my daughter’s school. She attends a private preschool/transitional kindergarten school. The parking lot is very small and there is no turn-around so, if there are no empty spaces, parents are either forced to ‘create’ spaces or exit back onto the street and re-enter the parking lot. There are NO handicap spacesNOT ONE!! I approached the Director about my need for one since I will be getting a van soon and will need to not only be able to let my ramp down but enter and exit the vehicle safely with my daughter. Ideas have been bounced back and forth, but none are feasible and her hands are tied as she answers to the corporation. I am left to wonder about parking safely when getting my daughter to and from school.

When I found out I was pregnant, 2 feelings emerged quite quickly. The first was of intense love. The second was fear – I prayed to God that my child would never face consequences due to my physical condition. I wanted my baby to have the most ‘typical’ childhood possible and to experience all that this wondrous world has to offer us. On a daily basis, I strive to make clear that my limitations are not her limitations.

However, as the years have gone by, I’ve noticed the need for advocacy regarding the awareness of and consideration for parents with special needs. I’ve become somewhat of a voice in my local community – not only for myself but (hopefully) for the parents who will follow in my footsteps, whether they follow on one leg and crutches or roll along behind me with their children in their laps – JUST KNOW THAT WE ARE OUT THERE. We are parents who have a right and responsibility to raise our children without limitations. We are parents who deserve to be seen, to be recognized, to be given the chance to live able, limitless lives with our children. Some of us may not be able to hear. Some may not be able to see; some not able to walk. Yet all of us are capable of loving and partnering with God to bring His miracles into this world.

The only limits we face are the ones society creates

 

Opposites Attract: Internal Progression vs. External Regression

Recently, I’ve been dealing with the decline of my body. Physically, I’m in an exorbitant amount of pain in my lower body; have had a decrease in the amount of time I am able to spend standing or walking; and have had increased difficulty walking & moving about in general. Emotionally, I’ve experienced frustration, self-pity, sadness, worry, stress and feelings of being unprepared for the changes which I’ve felt have been sprung upon me quite suddenly and much sooner than I expected (completely ignoring the fact that no doctor or specialist has been able to give me a time-frame for my prognosis; I simply feel “too young” for the deterioration I’ve known for years has been coming).

However, I can not let my insides match my outsides. As my physical condition worsens, my internal condition must strengthen. I can’t sit in the negative feelings. I must find gratitude and joy in order to continue on. As my body regresses, my emotions, mentality and spirit must progress. So, I let out the tears and talk out the feelings and then pick myself up, reminding myself that I still CAN walk even if it’s not as much as I used to be able to or as much as I’d like at present. I must be thankful for the abilities I DO have instead of focusing on my limitations.

My body is broken, but my soul is full, whole and healthy!!

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Please Welcome Back… Lazy Lylly!!

Oh, my! Not a single blog post since February??!!?? Lazy Lylly at your service!!

And, it’s not like tons of things (internal monologues, actually) haven’t been running through this nutty head of mine!! I could’ve posted plenty in the past 5 months, but alas, such is the life of a lazy person!! Every time I thought of a new blog to post, I told myself I’d take time for it tomorrow – and you know exactly what the saying is: “Tomorrow never came!” Well, it is TODAY! And, I have something to say; not much, only a little, but something nonetheless.

The past 5 months have been wonderfully chaotic, as only a single-mom-with-a-chronic-illness-and-disability-who’s-trying-to-go-back-to-work-and-still-be-involved-in-a-12-step-fellowship’s life can be!! My body has continued to regress and I’ve been back in Physical Therapy for what the doctors are hoping are only “weak hips,” though the PT hasn’t done much of anything to relieve the immense pain I’ve been in. I’m thinking I’ll have to end up having x-rays and an MRI to determine what is really going on – Oh! The joys of being scanned and shoved into high-tech machinery!! 

Because of the pain, I’ve been having to use my power chair nearly 100% of the time while at home and have even taken it to certain events so that I could allow my body to rest and relax, reaping more joy out of the occasion. I still refuse to take any narcotic pain medication, so using the mobility aids at my disposal has been the most prudent thing I can do at this time.

I’m still not working yet, which has been a cause of frustration. But, I’m trying to have faith that God simply has something perfect for me up ahead and I have to allow not only His will to work in my life but His timing. I’m saving up slowly but surely for a wheelchair accessible vehicle to transport my power chair (VocRehab denied a conversion for me), since it seems as though I may end up in the chair sooner than I had planned – although why I even bother to “plan” for a prognosis not even the multitude of doctors and specialists in my life can give a definitive time-frame for, I have no clue!! Guess it’s a part of my insanity!!

On a truly upbeat, don’t-wanna-miss-this-ray-of-sunshine, positive note: I go back to my neuro-opthamologist in a month and will find out if my IH is back in remission! I think it is and he thought at the last visit that it seemed to be looking that way, but wanted to be 100% sure. So, in a few days, I’ll be going back to the original dose of Diamox that I was on before I got so sick again. Based on how my body/brain react to that change, we’ll know if I’m in remission or not. Prayers and positive vibes my way would be much appreciated!!

Another awesome bit of news is that I’m only $1,700 away from my fundraising goal in order to go to team-training with my new Service Dog!!!! I’m so close!! I hope I can be in one of the 2017 classes and bring my new furry family member home next year!!

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I will make every effort to post a blog before another 5 months go by!! My ego insists that the online community cannot survive without news about my life or knowing what my opinions, thoughts & feelings are about certain subjects!! Until I post again, I wish you well! Thank you for reading and for being so patient with me!!