Well, this took a couple of days of reflection, where to start. I start with the day I was “formally” diagnosed with Multiple Sclerosis. What I say next is not the formal part, but the prelude to, “what I call, devastation”. I was told by my GP, that yes, I had “it”. Hearing this from him sent my senses into complete outrage, because I had known there was something wrong with me, but he wouldn’t listen to me. I had to demand the testing for MS and when the results came in, he took 2 weeks to let me know, or rather evade me. The only reason I found out was because I popped into his office and asked if the results were in. His wife, the receptionist, sighed, hauled herself out of her chair and looked into my files. Took a quick look at them, looked at me and scuttled out of the office to get her husband. He came out within minutes and asked to see me in the back room (way in the back). I followed him and took a seat in the generic office and waited. He opened the file, looked at a couple of sheets of paper, raised a busy eyebrow, looked up at me and said, in a very monotone voice “It seems that you DO have MS”. Mortified I asked to see them, and although he at first denied me, I was very adamant so, he handed them to me. The first thing I noticed was the date at which he had received them…TWO weeks before my visit. I was stuck into the filing cabinet and forgotten about. Hmmm why? because I was right all along. He told me he was going to make an appointment for me with THE MS specialist in Toronto. I was stunned and after a bit of, let’s say “temper tantrum” control, and telling him what kind of negligent doctor he was, I stalked out of that room, went to the front desk and demanded all my childrens’ and my files. The laughable part is she was going to charge me…THAT was not going to happen. My blood was boiling and the Dr could see this, so told said wife to hand them over…That was the last day I ever saw them.
Moving forward to the day I was to meet this specialist… My sister drove me there as moral support.
Walking into an imposing, dark office with an imposing, dark desk, I spied a man who tried to look as imposing as his office. All I saw and felt was a very cold, irritated, obnoxious man. He went through my file very quickly and diagnosed me, yes, with relapsing/remitting MS after a spewing a large amount of scientific terms that meant nothing to me. My question “So, I definately have MS?” His answer “Have you not been listening? YES you do!”
Now, moving forward into that day, we left and we walked through the echoing halls, me, like a zombie. I didn’t say a word. My sister chattered nonstop…”I’m so sorry, what do we do now? What if I have it? Are you hungry? Shall we go shopping to get your mind off it, oh I know let’s stop at Limeridge Mall, that will help” Even now I look back and remember thinking, should I strangle her here or wait til there were no witnesses. I know it was a shock to her as well, but she had NO concepts of the ramifications of having MS. I had 4 children to raise on my own with this ravaging illness. How does one get your mind off the consequences of this day? How do I raise my children alone like this? Shopping? I laugh now, because that’s what we did. She wanted to buy a few new items of clothing. Me? nothing, my mind was reeling…We finally headed home and I still couldn’t speak…Her “I’m sure everything will be ok” Me (finally speaking) “Shut up!! You don’t get it. This is not just about me, it’s about my children. Just Shut Up!!” She did.
Going forward a few days. I wrangled with the idea of telling my children or not. Do I let them worry? or do I let them find me paralyzed one day and truly scare them? I chose to tell them…Fortunately my youngest 3 didn’t understand, but me eldest did. My mom had MS and she died from complications from the drugs she was one, hence I do NOT touch any. My son didn’t take it well and that was the hardest part. He was told my his father that it was a death sentence (I informed the heartless creature I had MS), which I quickly rectified. I made sure life carried on like normal. I worked full time (sometimes too much), I worked out, we hiked as a family, went for picnics and did all the “stuff” that any family would do, just the 5 of us. For a few years my MS was put to the back of my mind, although I put myself on a strict diet with supplements that make me rattle like a vitamin bottle. Life was truly good for a while UNTIL…
Again, moving forward. We moved into a cute little bungalow that I thought well suited our needs. We were forced out of the house we were in as the owner was selling. Well, we move into this house and what comes with it? Hidden black mould which attacks my immune system, sending into a downward spiral. Within 6 months, I went from working full time, to being carried to bed by my 17 year old son. My eldest son moved out as he couldn’t take the declining health. Last date I worked was Jan 4/2005. So, I stayed home and this was the beginning of my “growth”. I, in the summer, would sit on my front porch and read the book “Excuse Me Your Life is Waiting” by Lynn Grabhorn. It gave me hope for that time being and I embraced Wicca. I always had, but “came out of the closet” so to speak. We still lived in “that” house and had to move quick, soooooooooo…
Well, lets trip forward again….We move into a beautiful townhouse which I knew was beyond my financial means, but we had no choice. So I take a part time telemarketing job, another job with a dear friend 😉 and tried working from home….my health was improving being in this wonderful new home, but my girls were rebelling drastically, which caused stress and a relapse. Drugs, alcohol, disappearing for days on end, etc. One morning, I sat up and said to myself “Enough!”. I called an ambulance and spent a “luxurious” week in the hospital with a nervous breakdown. It was all too much for me…The Dr treating me, asked about my home life and knew right away what I needed. I was in depression. He started me on celexa, which I didn’t what to submit to, but eventually did. Six weeks later, at home by now, I came out of “the fog” induced by the celexa and “found me” again. I remembered who I was/am, my spirituality, my inner strength, ME. So much happened in that time that I truly could run on forever but it’s not needed. It’s in the past and best forgotten.
We move again. My daughters move out on their own, on student welfare, forcing them to go to school if they want to get paid. (ahhh peace and quiet reign supreme). Because I received a large settlement, I paid their first and last months rent, set up a phone line with Bell (NO long distance) and being a mom bought them GOOD groceries, never giving them cash. My second eldest son moved with me and is my saving grace. He helps with rent, helps me on my bad days, housework etc. Life was pretty good until I spent 10 weeks in the hospital after a severe attack and come home in a wheelchair. That was in 08. My son moved in 09. It was his turn to live!!! The settlement quickly vanished as I was searching for that ever elusive “cure” for MS..visited so many Naturopaths, homeopaths, you name it I sought them out. I spent almost $12,000 doing this, with no results.
Moving ahead again to the day that changed the MS world. A friend called me up and told me of the W5 presentation of something called “the Liberation procedure”. My daughter was over, so we planted ourselves in front of the tv and watched with baited breath, of how many lives were about to change. During the show my daughter cried, with joy. Me? too stunned to feel anything except maybe disbelief. While the show was airing I was googling information of who to contact. Right then and there that night I knew I would get this done. I sent out emails that night that were listed on the W5 website and waited. Facebook, the next day was buzzing with activity about this life change treatment…Finally we had hope.
That was November 21/09. A day for thousands to remember. Canada refused to take part but other countries slowly opened their doors. If it meant traveling to another country, then so be it. The first time I had the treatment, I had a big fundraiser, which raised half and my bf paid for the other half (which I still owe him for). This allowed me to get this life changing procedure done. It was amazing in the beginning, but slowly the tides turned. I restenosed. I had to go again but truly didn’t know how I was going to manage it this time, but I started the ball rolling.
We had a bottle drive that raised a little over $1,000 and I started a Gofundme site which including the drive, raised $3,200. I am so blessed to have so many friends who care and donated to my cause. I was also informed by a FB friend to contact a group called WAMS…They help raise the needed monies to get treatment. So, I did. I received an immediate response telling me they would do what they could. WAMS posted my Gofundme site everywhere, to help with raising the funds to go. I shake my head still at the unquestionable faith and caring they showed me. Carmen kept in constant contact assuring me they had not forgotten me. I knew that. The emails from WAMS were always hearfelt and sincere.
Let’s jump once again to the day before I leave. That day I met with a lovely woman from WAMS who wanted to hear my story. I told her everything I could. She was very receptive and I could feel her empathy. It was a lovely conversation that left me feeling very cared about. The day of my departure, I receive a phone call from Carmen. She’s very excited for me and asks “how are you feeling?” I tell her exactly how my emotions were. I was excited and a wee bit nervous, or rather anxious would be more correct. I felt this was only because the Dr I’m about to see is very thorough. Was I expecting miracles? Carmen interrupts my train of thought with ” well you’re going to be even more excited now” Silence for a moment.I ask slowly “Why?” What does this mean? Is my appt to be cancelled? Crazy thoughts run through my head until I hear this “We are going to help you by giving you up to $4,000! to help cover the procedure”
To this day I remember the relief and elation I felt when I heard those words. I won’t be in debt with a CC looming over my head. I make less than poverty level with my pensions. I immediately thanked her profusely and when off the phone I thank the Universe and angels for watching over me. To me WAMS are those angel. And then I had a good cry. A very good cry which cleanses the soul and mind.
I say to all reading this, please support WAMS. They care and make it possible for dreams to come true. They were my angels, allow them to be another’s by showing your support and donate. Every penny counts. If everyone donated just $5. WAMS could send so many more MSers for this life changing treatment.
I and my children are forever indebted to WAMS.
Peace Love & Light
Jayne
