Category: A Journey Begins…

My memories of specific dates are pretty much non-existent since this all happened 13 years ago but I think you can get the gist of things.

It was the beginning or possibly the middle of December 2000.  I had just come home to my parents’ house for the weekend.  I had a doctor’s appointment to move from pediatrics to internal medicine within the Henry Ford Health System.  I was 18 and almost had finished my first semester of college at Western Michigan University.

I remember arriving home and running up my parents’ porch (that I had done a MILLION times thus far in my life!) and the last step was difficult for me to get up.  I had to try a few times and I realized that was the first time I had done that EVER!  I thought it was a little bit weird but didn’t pay much attention to it.

My appointment was for 4 or 5 and my Dad was taking me because my Mom was still at work.  The appointment was just a “meet and greet” with a new doctor who would be my new internist.  I can’t even remember her name now.  I’ve thought to retrieve my medical records to get all of the facts straight (the dates and stuff) but have not gotten around to it.  So, I meet with this doctor and gave  her some of my health history and told her about myself.

I mentioned some tingling and numbness I was feeling in my feet and it recently moved to my hips and thighs and up to a little bit above my belly button.  I had been feeling it for a while and I found it just a little bothersome at that point.  I lived in Valley 2 of the freshman dorms which was 1 mile off main campus.

Because my first schedule was done for me (computer generated for ALL incoming freshman) I needed to make the trek to main campus 3 times a day.  Maybe my legs were just a little bit tired.  In addition to my trek to main campus, my boyfriend at the time (my son’s father) still lived at home and worked framing houses.  He would call me on his way to work EVERY SINGLE MORNING!  He would go to work at about 6:30 a.m. and my first class was not until noon.

After talking to him for a half an hour while he drove to work, I was wide awake so I started working out at the Rec on main campus for like two or three hours a day.  It was at the Rec at Western that I discovered the elliptical machine and I would be on it for like an hour EVERYDAY!  My first semester away at school I got the “Freshman 15.”  I LOST 15 pounds!  I didn’t think that given how fit I was back then, my legs would not be numb and tingle because of all that walking.  I was in shape.  6 miles a day going to and from class should not have been a problem.

The doctor seemed a bit concerned by me telling her of the numbness and tingling that I was experiencing.  She did a bunch of tests on me.  She pulled out this tuning fork and kept hitting it and putting it on both of my feet and legs and asking if I felt the vibrations.  (I didn’t)  Then she took one of those big Q-tips they have at doctor’s offices and broke it in half.  She kept poking me and asking if it felt sharp.  (It didn’t).

She did the same test a number of times and after she was finished; she looked at me and my Dad (she had called him into the exam room) and told me that I need to go to the ER tonight. She thought I was having neurological problems.

Per the doctors’ orders, I went to the emergency room downtown. My Dad had taken me home and my Mom had taken me to the ER. I was beyond irritated! I was only home for the weekend and I had a boyfriend to see! This doctor just didn’t get it!  All for some numbness and tingling in my feet?!

We were at the ER FOREVER! They repeatedly did all of the same tests that the internal medicine doctor did.  They would come in, ask about the tuning fork vibrations and poke me with the broken Q-tip.  The results were ALWAYS the same.  I never felt any of it.

They would leave and come back an hour later to do the same thing.  It was late.  I was tired.  Obviously, I wasn’t going to see my boyfriend and I was given all the privacy possible in an emergency room which is NONE.  I remember hearing that CRAZY things were going on in the middle of the night at the ER downtown!  I couldn’t sleep on the gurney (it was a little bit wider than my hips) and was in tears.  My Mom told me to get dressed and she went to the nurses’ station to tell them we were leaving because all they were doing was the same tests and that we would follow-up with my doctor.

The nurse told her that we could not leave because they were admitting me. The floor they were admitting me to was primarily for geriatric patients. They were waiting for a private room to become available because I was so young.

I started to be concerned at this point. I was so tired I just wanted to get comfortable and sleep which I could not do in a noisy emergency room.  I was not admitted to the hospital until 6 am the next morning.

It was 6 o’ clock in the morning when I finally was settled into a room and in a comfortable bed. I was looking forward to getting some sleep. At eight o’ clock in the morning a doctor came into the room and was firing questions at me and snapping her fingers and telling my Mom to get me some coffee.   I remember telling her that “I don’t drink coffee.”

My Mom explained that we just were admitted after spending the night in the ER. This doctor was not at all sympathetic!!! She told me to get up and walk to the door. So I pulled the covers back and swung my legs over the side of the bed. I stood up and I immediately collapsed to the floor.

My Mom asked, “Jennifer, why did you do that?!” I looked at her incredulously. I didn’t do it on purpose! I just couldn’t stand up or walk. My inability to walk lasted for 4 days. Those 4 days I spent in the hospital.  At that point, it was the scariest 4 days of my life. Was I going to regain my ability to walk?

While in the hospital I had in number of tests done to me. I had a full MRI done of my brain and spinal cord.  It was years later that I vaguely remember having electrodes stuck to my head and some test done in the middle of the night while I was sleeping to measure brain waves or something. I also had a spinal tap done.

The spinal tap wasn’t as bad and everyone says it is. I just like that I can say I had one done. It makes me seem hardcore.  The doctor did the spinal tap right in my room.  He told me I was small enough to just do it while I was sitting on my bed.  He told me to hold still and explained to me that I would just feel a little pinch and it may be a little bit uncomfortable.  

My Mom was in the room watching as he did it.  I remember she gasped as I felt a pinch in my lower spine.  She looked at me and exclaimed, “that needle is this big!” as she held up her fingers to measure about 6 or 7 inches I looked and her and said, “Mom, the needle is still inside of me, don’t tell me that!”

My boyfriend came to see me everyday and walked with me down the hallway and back.  Really he was just carrying me down the hall and I went through the motions of walking but I did not want my legs to atrophy while I was unable to walk.  They had me on steroids for my entire hospital stay. Now, I understand that I was on A LOT!  I was on 60 mgs, the normal dose was usually 3 to 5 mgs.  

But, I had regained my ability to walk and they were finished doing all the tests they needed to do. They discharged me and told me that I would need to make a follow-up appointment with Neurology to go over the test results when they came in.  When I left, the numbness and tingling in my legs persisted.  My follow-up appointment was made for December 28th.

My Mom came with me to the Neurology clinic at Henry Ford Hospital to discuss the test results from my recent hospital stay. The Neurologist who I saw in the hospital was very kind and EXTREMELY young; GREEN may be a better description.

She came in and told me that my spinal fluid had elevated white blood cells. It wasn’t a really high number but it was elevated. She also told me that my spinal fluid was clear and most of the time it is cloudy. She really wasn’t telling us anything conclusive about the tests I had done.  She obviously was uncomfortable about something. She left the room and an older  (obviously, more experienced) doctor came in.

She walked in and asked, “What’s going on here?”  She looked directly at me while I was sitting on the exam table  and said, “You have MS.  You’re going to go blind and you’re going to die.” Then she turned on her heel and walked out of the room. EVERYONE I tell that story to does not believe me but it is TRUE!!!  My Mom was in the room with me and heard her say it to me. Both my Mom and I were SHOCKED!!!

In my shock, I broke the silence by saying, (not really to her) “I’m going to have a baby.” My Mom turned to me and exclaimed “Jennifer?!” in disbelief of the statement I just made. I found out I was pregnant with my son 5 months later.

Then the Neurologist who saw me in the hospital came back in.  So that was it!  She didn’t want to tell an 18 year old that she has MS!  While at the hospital, the ENTIRE medical staff was baffled that someone SO young was having the neurological problems that I was having.

While in the hospital, I was told that people don’t get diagnosed with MS until they are 25.  But this woman just told me that I have MS!  The young doctor told me to “do nothing” about this diagnosis.  I was SO young, perhaps it may just remain dormant in my system.  She told me to finish the prescription of steroids and to follow up with the Neurology clinic annually.

In retrospect, I should have acted differently with this diagnosis.  Both in the deliverance of this news to me (the bedside manner of that doctor was INEXCUSABLE and REPREHENSIBLE!) and I should NOT have done nothing.  Hindsight is ALWAYS 20/20 but both my Mom and I were TOO shocked and numb to think of any of these things.

So I really can’t remember the transition of going from able-bodied to being disabled. I remember playing basketball in my son’s dad’s yard and it seemed a little more difficult. This was before my son was born. I also remember being in class (at U of M-Dearborn (I transfered from Western to be closer to my Neurologist)) and having to step out of the building because I felt my legs were on fire. It was winter and I just wanted to cool off.

I also remember a class was moved at school one day so I needed to walk around to the other side of the building to the other classroom where class was going to be held. I walked with another student (her name was also Jennifer – there were like 25 students in this class and five of us were named Jennifer).  The prof asked if “the Jennifer’s are in college?”

As we were walking to this new location my legs were tired.  I was wearing Doc Martens which are a little bit heavier than normal shoes so I was like stomping my feet and the girl I was walking with kind of looks at me questioningly and I said I have MS. I remember that being the first time I said that out loud to a stranger. I knew I was slowing down.

I was tending to use the walls at school to help me walk to keep my balance. I remember seeing an episode of ER with my parents. It was strange that I was watching ER and watching it with my parents but we watched it. One of the doctor’s sister had MS. They were sitting in a restaurant laughing and talking and another doctor walked by and thought that she was really cute.

It was time for them to get up and leave and her brother walked over and got her Canadian crutches any handed them to her as she stood and put her arms in them. It was after seeing this episode that I got my Canadian crutches. They REALLY looked like they would help me a whole lot. Sean was about 3 at the time and they really DID help me!!!

I remember that the doctor who thought the sister was cute looked at her when she put her arms in her Canadian crutches like “0h! She’s sick.” I got that look MANY times when I was still on crutches.  Sean was walking on his own then and I used to tell him to “hold mama’s crutch” as we would go somewhere together.

I was on crutches until I broke my ankle during my student teaching. Sean was about 4 then. I slipped on ice on my way to my student teaching job and broke my ankle. I called my cooperating teacher and he asked if it “was MS or dumbass?” I laughed and it was 68 degrees when I finally left the emergency room. It was broken in half.

I was in a wheelchair as it took 6 months for my ankle to heal because I didn’t have a lot of blood flow in my feet. Things were a lot easier from a wheelchair. I didn’t really get out of the wheelchair after breaking my ankle.

It was the summer after I graduated from undergrad that I went to Florida for electronic acupuncture and I started the journey with organic food. It was then that I stopped all medications and started supplements and using natural EVERYTHING.  I have continued on this journey for about the past 6 years and still do it but then I met Mike Batwis 5 months ago.

Now I really feel that things are starting to happen! I’m definitely not at the end of my journey yet but I am the most hopeful I have been for the first time since my diagnosis.  I spoke to my cousin, Kimmy,  today who also has MS and we are in agreement that MS sucks!

I really feel that I am doing something about it now! I will not sit back and accept this.  I’m trying!  I will not just get an electric wheelchair and give up on walking. It is SO hard at times but I am still doing it!

Just before Christmas this year, I told Sean that my 14th year anniversary was coming up.  He told me that it’s close to how old he is.  I agreed with him and told him that I got pregnant with him just months after my diagnosis.  It’s been a quiet day.  I’ve been quiet.  I clearly remember the events of today 14 years ago.  That doctor told me, “You have MS, you’re going to go blind, and then you’re going to die.”  Even today, I think about what a GREAT bedside manner that doctor had!  It’s unreal that a doctor could get away with telling that to a scared, 18-year-old and her mother!  But, she did.

Well, 14 years later, I am NOT blind nor am I dead.  I wish I could say that this MS diagnosis has NOT effected me; but I can’t.  My decline has been very gradual, so much so that I can’t remember losing some abilities nor can I clearly remember having the ability to do some things in the first place.  NO ONE in the Neurology department (or close to me personally) believes that any of my abilities will get better or return completely.

That statement is both completely true and equally heartbreaking (for me).  But I started coming to Barwis Methods 17 months ago and everyone there believes that I will.  So many people who I know ask me if I’m “STILL going there?!”  As if I would stop!  I’m NOT walking YET so OF COURSE I would still be going there!  I’ve said before that Barwis is the only place in the world where I feel comfortable in my hope of walking again and it is completely true!  In 100% of my dreams, I am completely able-bodied and at times it is difficult to wake up to my current physical disabilities and limitations.  I am working SO HARD to make my dreams come true but I think this all is a lesson in patience.

I’ve said before many times in this blog that I am not a very patient person but what other choice do I have?!  For now, I just have to look at this situation as a dream deferred.  This thought makes me think of that Langston Hughes poem:

One thing I loved about English class in high school (where I first read this poem) and college as well as teaching it is that you can read a piece of literature and interpret it however you like as long as you explain yourself.  Upon first reading of this poem, I remember thinking the imagery  was rather depressing but upon further discussion, I realized that we (the class) could interpret it in all sorts of different ways (which we did) and still ALL be correct.

For my particular dream (of walking) I imagine it to be sugared over and “syrupy sweet.”  In the meantime, I’ll just continue working really hard to achieve my dream and for now, know that it’s just deferred.

I’ve gone over the events of today so many times in my head in the past 15 years.  I can remember how it smelled and what that doctor said before turning on her heel and leaving.  Such profound words!

I never would have thought I would be in the place I am right now. Loss of control over my body was so slow that I barely remember being able to do things on my own.  I know that I used to be able to but my memories of doing so are vague.

I’ve  had MS for 15 years and only found Barwis about 2 1/2 years ago.  It’s hard for me to believe that it has been so long. When I was young I looked forward to turning 15.  My Quinceanera.  My party with the dress and church service and attendants (damas y chambalines) and subsequent dinner and dance at some hall where my family and friends would party all night.  Well, I didn’t have a Quinceanera when I turned 15.  I stood up in a couple and have been to a number but as a family, we weren’t that immersed in Mexican culture when I was 15.

I talked with my cousin a while ago and told her that my Quinceanera was coming up.  My 15th year having MS.  We laughed and joked but couldn’t believe that it had been so long.  I REALLY can’t believe it but what am I going to do?  I just deal with the days as they come and work hard at Barwis.  It hasn’t been easy nor do I expect it to be all of a sudden in the near future but I remember that today; I am La Quinceanera.

Today’s my day.  It’s my Sweet 16.  This journey has been anything but “sweet.”  For sure!  I cannot believe that I’ve been fighting this battle for 16 years!  I can’t believe that the fight has been THIS brutal!  If someone would have told me that it would be THIS bad, I wouldn’t have believed them.  Who can handle this?!

The answer to this aforementioned question is – ME.  I’ve asked my Mom SO many times, “Why?”  I don’t know the answer to this question but I know I am not alone in this fight.  SO MANY people are fighting this battle also.  They are fighting their own battle simultaneously to me and this battle is fought inside their own body.  The only casualty in this brutal battle is ourselves.

This battle is invisible to other people but that does NOT make it any LESS painful!  Rather, it is MORE painful because no one can see it.  We are not making this up or crying wolf!  So my battle has been going on for 16 years and even though I know there are many people who have been fighting this battle longer than I have, I don’t want to diminish my fight.

Sweet 16 parties to me have been marked with pink “frilly” decorations, friends, family, and a beautiful dress.  My day is not marked with these things; rather, it’s marked by losses, inabilities, and hardship.  I don’t want to spend time enumerating all the difficulties that are faced every single day.  My fellow MS fighters know the fight all too well.

For my MS Sweet 16, I pray for an ease to these terrible symptoms for myself and everyone in this fight; I pray for the strength to endure these symptoms if they are not to ease just yet; and mostly, I pray for and would LOVE a cure for this really mean disease!  That would be SWEET!

During my senior year of high school, I drove my friend to school. On her 17th birthday, I arranged things with Mr. Flint (the first teacher to arrive to and open the school)  that he would let me in early so I could decorate her locker for her birthday. After the locker was decorated, I went to pick her up from her house for school.  I had the CD player all queued up and when she got into the car, I played, “Dancing Queen”  as we drove to school.

As with all music I listened to back then, it was turned all the way up and I sang along with every song I played while I was driving. I enjoyed seeing her face when we walked into the school and she saw her decorated locker.  She was puzzled as to how it got decorated and I told her how I did it and that I came to school early to decorate it before I came to pick her up. That was so long ago but I still remember it with  so much clarity.

Well, today is the 17th anniversary of being diagnosed with MS.   I DEFINITELY do NOT feel like a dancing queen even though I’ve listened to this song a few times. I’ve been quiet all day. My family really doesn’t understand how devastating this day is/was for me. It was the day that my life changed forever and I didn’t even realize  how much it would change 17 years ago.   I was a carefree kid who listened to loud music and sang along when she  drove. Things are so different now! It seems like being a “carefree kid” is a lifetime ago. Yes, it was a long time ago but being a “carefree kid” without MS changes everything.

This is the last year that I will be able to say that I have had MS ALMOST half of my life.  Next year,  I will be 36 and it WILL BE half of my life because I was diagnosed when I was 18.  After that I will have HAD it longer than I HAVENT HAD it.   People don’t really understand the severity of that distinction.

Next year, it WILL BE half of my life  but today it is ALMOST that.   I have difficulty remembering the “carefree kid” who didn’t have MS because it is so different from the woman with MS that I am today.  She DID exist though and I am reminded of that on my 17th anniversary because it makes me think of that ABBA song.   I will just have to settle for being a dancing queen in my head because I physically cannot be one today, I haven’t been able to be one for almost half of my life.

Today, I am quiet. I’m always quiet on this day. I’m not going to say that it was a day that my world cracked. I’ve been through a crack in my world when my Dad died and this is not that! However, it has been a definite shift on my axis. Everyone knows that with the slightest shift in and on your course will take you so far off of your intended destination 18 years later.

The result of that slight shift has led me to where I am now. Where I ended up is so different from where I thought I would be before the doctor told me that, “I have MS, I’m going to go blind, and then I’m going to die.”

Today is the 18th anniversary of that doctor telling me that I have MS. I have had MS for half of my life! Now, it’s not as if having had MS for half of my life is not hard enough, but my knee injury, subsequent surgery, and prolonged pain has caused that slight shift to become even more pronounced!

It is beyond difficult to endure! The constant pain is almost unbearable and the fact that I resisted having a motorized chair for as long as I did doesn’t matter now because with the pain I am in, I have to have one! Yes, that slight shift on my axis is horrible! Hence, I am quiet.