CHAPTER 19
In the Meantime – Back to College – 2003
Now that I understood how control changes everything I put my energy into treating each day as a good day. I swept away the resistance keeping me from understanding I am stronger than the beast. I found my way through challenges that concealed my need to move on, to leave trauma behind and re-introduce myself to a better life, disability and all. No extra weight on my shoulders, just a lovely wobbly way of life.
I returned to MATC looking forward to a better life. Somehow, my re-introduction to control pissed off the beast which I now realized was in fact resistance. The damn thing fought to raise its ugly head and squeeze me down the drain with it. Still not wanting to give up, the rotten beast tried to crawl out, but I won, I kicked its ass. In trickery I let it come out. I grabbed and pushed it in the path of a Mack truck, mess for it and a clean escape for me.
With a second round of independence and appreciation under my belt came an intensified sense of control. I reconnected with society mingling with all kinds of people. Those who knew me enthusiastically supported my revived creativity and long term vision to share a reflection of experience. Except SFB, that was a given.
MATC opened a meaningful concentration where for the first time in a long time I envisioned a future filled with amazing possibility. Back was my optimism, gratitude for life and happiness as I inhaled the sweet breeze of appreciation. I was riding on the wings of independence.
Don’t get me wrong, college wasn’t easy by any means and often tested my optimism. Lack of balance, the crazy way my eyes interpreted my surroundings, navigating the campus and concentrating on lectures in real time was exhausting! But I did it.
I did it with help from Todd Jones and Beth Bremer. Their support proved I had the strength to cope with exhaustion. When I first met Todd, in the Disability Resource Center, I saw him sitting in a wheel chair. Todd had a serious car accident leaving him paralyzed from the chest down. During our first introduction I thought, what the hell gives me the right to complain about anything! I learned that Todd endured years of physical therapy to regain limited use of his arms and hands. Todd has a real understanding of what disability is and shared with me the hope I needed. Todd is a force of his own. He is amazing. When I connected with him we worked together to establish accommodations that helped support my strengths.
Beth, who worked in the Learning Center, was always there to guide me through assignments that shifted my brain into an explosive overload. Her consistent advice and brilliant way of teaching positioned me reach a new level of determination. Beth is also incredibly funny which made learning fun. So, by combining the assistance and encouragement from Todd and Beth, I discovered that the all my experiences and strengths pre-disability were still intact and transferrable to the new experiences I was creating. What an advantage!
I became great fiends with Todd and Beth where even to this day they are an immense presence in my life. They mean so much to me, they changed my life. I love them.
I always sat in the dreaded front row to minimize distractions. Todd connected me to a student who took notes adding an extra element of information I missed during lectures. I was allowed to use a tape recorder to capture lectures so later I could listen to them in an effort to grasp more. I was even provided extra time on exams in a quiet room. With the use of a note taker I was able to put as much extra concentration I could on lectures as they happened. I took my own notes in a way only I could decipher. My learning had become quite a combination of hearing, writing, reading, and doing.
Noise, paper shuffling, coughs, sniffling, and movement in classes messed with my concentration, especially during exams, hence, using the accommodation to take them in the quiet room, sounds like a place for naughty people… I really hated going there – I felt being absent from the classroom during exams made it known to everyone I had a disability, let alone how it eclipsed my liberation. Then I discovered a way to take exams with everyone else. My strategy: I used earplugs; they put me in a zone of complete silence, except for the ringing in my ears, another side effect of ototoxicity of which I had become accustomed to, well mostly. The earplugs worked, my liberation stayed intact.
Something else I discovered was that I developed an amazing photographic memory, in spite of the way I saw things. I’m convinced this was because of the extra effort I placed into reading and re-reading assignments. The information clicked into my memory where it developed into images I could pull out when needed. For example, during an exam I could “see” the answers. When I closed my eyes I could see the page in the text book, see the paragraph, and then the sentence that held the answer to the question. To this day I can still do that.
The most difficult task was navigating the halls. Students were everywhere, walking to their futures and unknowingly stepping in the way of mine. All around me was a sea of bouncing blurry people, a spectacle of confusion yet; I was determined to make it work.
Carrying my backpack was a big challenge. I tried carrying it with my free hand but that only made things worse. I tried wearing it on my back but that made the way I had to lean forward much worse. My strategy: I built a contraption using a luggage carrier on wheels and attached my backpack to it with a bungee cord. I could wheel it using the hand I had free. The backpack invention was a success. Quite the sight I’m sure but I didn’t care. Having the backpack on wheels in one hand, my cane in the other, the big test was putting it to work at school. I continued my walks with my head down watching the floor, body bent forward, with occasional tiny glances up, I found a reduction in my wobbling this way and that. So, I pulled my wheels and like a salmon, pushed my way up a stream of students: In a nice way.
What I found fascinating was how fasted I walked. The faster I walked the better I could navigate. Moving slow my body fumbled and bumbled not unlike when learning how to a ride a bike, one wobbles all over the place before mastering the ride.
Sometimes I bumped into students and damn near took dives, but gratefully was caught by those I bumped into. I became known as the one to catch when needed. The more I worked on making it to class, the more I thought about strategies on how to better navigate the collection of obstacles.
My strategy: Having discovered that moving at lightning speed helped, I wondered if I combined it with a stop about every 10 feet or so I might be able to get a better bearing on where I was and how far I had to go. Let the experiment begin. The stop was a task in itself, it set off a series of wobbles and that lovely sensation I was falling. A natural kind of compensation to a lack of balance is walking with the feet spread apart forming a wide stance a bit more than shoulder width. Somehow that helps shift the center of gravity we all need to stand up.
My strategy: When stopping I let go of my wheels, using both hands placed on my cane in front of me between my wide stance I became a human tripod. With three legs came an improved ability to stop, stay still, raise my head and body and settle down the bouncy vision. This strategy was the best of all! The more strategies I came up with, the more confident I became. Perhaps I should have become an engineer!
But wait, there’s more. My strategy: When class schedules worked in my favor, I would set out for class early, often being early enough to relax, chat with the instructor, or review the days work. An early departure meant fewer students in the hallways and less stress for me.
However, one troubling experience remains in locked my memory. One of my stress free departures arrived and preparations began. The classroom was quite a distance away, like getting to a connecting flight where boarding was on the other side of the terminal. Don’t you hate it when that happens?
Becoming accustomed to my ritual, I packed determination in my wheels, grabbed my cane, wound up my fast walk, scheduled stops and took off. Stopping to assess the situation, I found the hall empty with the exception of students sitting on the floor at the very end. I felt nervously intimidated; I was the only person walking towards them. My strategies certainly made me stick out and a nervous one on one strategic interaction made me wobble even more. During my stops I could see the students taking turns looking at me or they were all looking together. I felt like I was under a spotlight. I tried to minimize the situation thinking, should I start dancing or something? In my eyes the hall appeared extended far beyond its real end. Like in a scary movie, I couldn’t get anywhere; it just kept getting longer and longer. Of course, that really wasn’t true.
Passing by the students it was like I were a zoo animal on display. With the students looking at me through a barrier of disregard, they were sharing comments; how strange I was, how weird it was to watch me, how I made them feel creepy. I turned the corner with a punch in my gut ashamed of what I had become. Then I got angry. I was not going to let them get away with their lack of respect.
I turned back around the corner and in full disability glory, like a seasoned professor, I began a lecture. I explained to them that not only was it difficult to be taking on the challenges of life with a disability I found their hurtful comments nothing short of bullying. I explained that just as they were, I was there to learn. I explained to them their actions made me feel ashamed of myself. I explained that making fun of a person disability, or not, is hurtful, confidence busting, and seriously childlike. They all stared at me and with big sorry eyes, apologized. Before I turned the corner I looked at them and from the heart I shared that I hope none of them ever have to endure disability, that it in an instant it could happen to them. With heartfelt compassion, I wanted to them to think about how they would feel if ever they experienced disability disrespect or disrespect in any other manner. Then I left, and even by confronting those students, I made my way to class, found it as empty as I felt, and sobbed.
Subject Zero 
Thank you for writing this blog, Cheryl. Your courage and determination inspire my own. My vestibular problems are not even on the same level as yours were, but I can so relate. The most difficult part for me is getting up in the morning knowing I have to face another day of instability, bouncy vision and dizziness while knowing life goes on all around me, but it is difficult for me to be a part in it. It is getting around the depression and anxiety that comes with this disability. Thank you for giving me hope that I can overcome the beast. 🙂
Hello Sheri.
Thank you for reading my Blog, I very much appreciate that.
I’m sorry to hear you are struggling with vestibular problems. It is a rotten beast! How long ago did this happen to you?
I truly understand how it feels facing another day feeling separated from “life on the other side”. Disability can consume you – if you let it, that’s the beast. Look of it as a noisy, rotten, creep that thinks it has control while all the while the control is within you. I know this sounds like an impossible task to on, but kicking its butt does happen, it will happen.
I’d like to introduce you to a friend of mine, Michele Rosenthal. She is an author and has her own radio show all about trauma and the depression and anxiety that comes with it. What happened to us is indeed a traumatizing experience. I believe you will find Michele’s work and support very helpful. She’s an amazing woman. http://changeyouchoose.com/
What I learned is that disability can grip us to our past, in all the things we used to be able to do, that’s all we think about along with what’s my day and future going to be like (the noisy beast). However, I suddenly realized that each and every experience and every skill I had learned were still with me, they will never disappear, ever. Bringing that into right now really helped in my recovery. I founds ways to adjust my way – not the rehab way, I discovered I could create silly but effective ways to get around. That’s actually rather fun. :>)
Sheri – life is still going on in you and around you, it’s in each and every moment of your day. That’s the one thing that I had to learn – ignore the past, don’t worry about the future and live in the moments of now. This didn’t happen to me over night, it took time to find my way to the moment. It takes practice. When I figured out I was still me, just in a different skin, I decided to wear stripes with plaids – I made a statement of wobbly fashion. Take that you outsiders!
Please feel free to stay in touch. I’d love to hear about your success.
Take Care,
Cheryl
Hi Cheryl,
Thank you so much for your reply. I was just showing my husband your blog and saw your message! Totally made my night. 🙂
My vestibular issues began 19 years ago…the first time I tried everything and I am not sure if it was time that healed or all the alternative treatments I tried after many doctors visits and finally being told I was “chronic” at the Mayo clinic and I needed to learn to live with it.
My plan became to fight to get up and raise my children and plan an exit strategy if I exhausted every weird alternative medical treatment available. (ashamed to admit those terrible feelings and was overcome with guilt)
Somehow I made it through and was almost totally recovered at the three year point. My children were 3, 5, and 9 at the beginning. I couldn’t take care of them for the most part. I was blessed to have a lot of support. I admire your strength and can relate to pushing through each day to reach a goal while dealing with an invisible disability. Not many understand, my mother-in-law thought I was just lazy. I attended all that I could, but I’m sure many people thought I was a total drunk from my gait to my red eyes from trying to focus on the moving environment. It was unbelievable to me that I actually able to make it back to almost 100% even after 3 years and could actually think clearly again.
Then…eight years later the beast came back. We had been traveling and when we returned home everything was moving again, a world of constant rocking. Balance gone..dizziness returned. I freaked out and became suicidal yet again, how could I survive what I knew was Hell and would it get better a second time? Somehow I did get through, sometimes we find the strength when we feel there is none left. This time I was much better after about 2 years, but really only got back to about 80%. I stopped traveling in planes and avoided many things that would affect my balance and dizziness. I did a lot of vestibular therapy and alternative treatments again. I was still able to raise my children and start a very successful investment company six years ago. I own 13 college residences with 80 students on individual leases who think I am their mother-stressful LOL…my website is rtlinvestments.com. 🙂
Anyway….I was hit again 4 months ago and who knows when and if I will recover..all I know that the anxiety and depression came back with it and that is the bigger beast. Can I do this a third time? I have a grandchild who is just over one and another on the way. I fight through everyday and it seems at the age of 48 I have no fight left. My family has pitched in to help with my business because I can’t seem to put 2 plus 2 together and was very anxious about meeting with new students and their parents, embarrassed at my confusion and imbalance. Not to mention constant exhaustion.
This is why it is so important to me that you have shared your story. Hope is a huge part of getting through my dizzy wobbly days. You have given me so much hope. I am so happy for you that you have overcome all of what you have been through and live life with such grace along with much humor. By the way…I can’t look at stripes or plaids! LOL I will keep you in my prayers and will up-date you on my hopeful progress. Be well and enjoy everyday.
Blessings to you Cheryl!
Sheri
PS….I want a brain-port to try! Wishing it was still available!
Dear Sheri,
Thank you for sharing your history and the struggles you have, and are, experiencing. I so wish I could give you a hug – just imagine it okay?
The “learn to live with it” phrase really ticked me off. Yea, easy for them to say – Who the hell do those people think they are? Could they just live with it if it happened to them? I was told the same thing…
My dear, an exit strategy is a permanent solution to a temporary problem. Yea, our conditions are rather permanent, but how we feel and relate to the beast is a temporary path. I understand Sheri, this crap sucks. But reflect upon what you have accomplished – that’s admirable! And, do not feel guilty for thinking about an exit – you were in a place of fear and uncertainty not knowing how, when, or if. It happens to the best of us.
Making it through what you have be through is, in my opinion, a monumental show of strength – without having to work out with dumbbells! It’s so difficult to make others understand that what we are going through is real, it’s not being lazy or that we’re drunks – although that might have been a better experience! :>) I remember when I was first introduced I would go for walks. I staggered and wobbled all over the place. I learned from the talk of the town that everyone thought I was drunk. Not letting that idea go I simply put an empty soda bottle into a brown paper bag and started carrying it with me – take that rumors!
An invisible disability isn’t up to us to prove. It’s more about sharing the truth so others can prove to themselves they are wrong. But really, it’s none of our business what others think of us.
I’m wondering, have you been evaluated for a condition called mal de debarquement syndrome? (http://www.mddsfoundation.org/) The reason I bring this up is that from your description your symptoms they became worse or returned from after traveling – Mal de Debarquement syndrome often occurs after people travel in planes, driving long distances, or by ship on a cruise. I’ve included the web address that may help you.
Freaking out became one on my best Broadway play encores ever, only the darn curtain never opened and the play was a one woman act… What I learned was that I was the producer and writer of the show. It was mine to make a success.
Holy cow! You started a business? That is fabulous! You should be ecstatically proud, I am! Having your family pitch in must give them a great sense of accomplishment, after all they’re working with one of the best! Just think about what you are teaching them. It’s hard, damn right hard, to have to ask for help, it’s woman thing… But you’ve done it, good for you.
Did you know that the need to fight comes from within us? It is often covered up with crap (the beastly thoughts), but hey, that’s why they make TP! :>O
Another thing I learned – it took a while to catch on to this one but – I did not have to be embarrassed of who I am. It is what it is. When it comes to exhaustion, rest without guilt. When I felt pooped out I’d stop what I was doing and sat down. I learned how to listen to myself and my body, another hard to do woman thing… Damn you boobs!
That recovery thing – anxiety and depression are part of the game, please do not let that get in the of way of moving on. You’ve done it before, you’ll do it again. A little known fact about me (getting to this in my blog – and I suppose it’s out of the bag now) is that after my introduction, I was the proud recipient of an aneurism – Wahoo! What a lovely way to enjoy brain surgery! Oh, wait there’s more – Seizures! Yes, bring it on! Not the grand mal kind, more of a stare into space drool kind :>). I guess what I’m getting to here Sheri is that once you beat it the first time, use the power you learned you have. It multiplies every time a bump in the road shows up. The more we fight, the more we know how to fix the road.
So – there are my thoughts for today.
I’m honored that you find my story helpful. My goal is that by sharing what I’ve experienced can help others experience a better life. It can, and will be, embraced.
Don’t you just hate the thought of wearing stripes with plaids? Now that’s embarrassing!
Many blessing to you too Sheri – shine with the light you have in your heart.
Cheryl
PS: I wish there was a Brainport for you to try too! Try to use your own port to open endless possibility.