Now for the lovely and talented Michelle

I used to frown on connecting with people in cyberspace.  So happy I opened my mind!  I joined a private group on Facebook for adults with Muscular Dystrophy where I met a fabulous group of people.  One of them is Michelle who has an amazing marriage and knows how to enjoy life!

I want to thank Laurie for letting me a Guest Blogger today.  I wanted to tell you about a website my husband and I have started

www.Szumski-Says.com

It is hard to reinvent yourself when you’re not a POP-STAR.

Hi my name is Michelle.  I have been diagnosed with adult onset Muscular Dystrophy (LGMD).   Five years ago (ok maybe 6) I was a single mother of 2 teenagers when I started having trouble getting up from a chair or going up stairs.  I thought, “I need to get off my booty and start working out.”  Which is exactly what I did.  As I was working out, I was breaking down muscle tissue in my core muscle group (stomach, back, hips, hamstrings, shoulders) as everyone does during a workout.  Unfortunately, LGMD inhibited the muscles from repairing. I thought the same thing you are thinking, “Oh man, that SUCKS.”

So, I went from a very active person using her two legs and all her major muscle groups to a very active person that uses a fancy powered wheelchair (insert snarky face here).  The transition has not always been smooth and those close to me know it isn’t quite complete yet (sigh).  Just when I think I have come to terms with the “new” me, I am confronted by something else (who knew you couldn’t get off a Cruise Ship at most Port of Calls if you are in a powered wheelchair, they really should put that in the brochure, Grrrrrr).

My husband, Jim (more on him later) and I started this blog in hopes of sharing information, tricks and tips, information, humor, recipes, research and even Bow Chicka Bow Wow strategies (wink, wink) that have worked for us or we have heard works for others.  While we are not experts, we will be sharing information we wish we could have found.  The process has not been easy and it doesn’t seem to end.  We hope to become friends with the folks who read our blog and hope you share your journey with us.  We hope to create an area where others can go to learn about dealing with an acquired disability or adjusting to disease or aging.   We want to share information on new technology, travel, or offer encouragement.  All are welcome, whether you are interested in this blog for yourself, a family member, or a friend.  We all know someone in transition.

This is our JOURNEY.  It is not a dress rehearsal. The time to LIVE and LOVE is NOW.  Thank you for being part of it.  Please visit us at www.szumski-says.com and leave us a comment!!

oxox,

 

The Best Laid Plans

A week ago I returned home after the best ever vacation!  Tim and I had booked a trip that included 5 days in Las Vegas and 7 nights in Palm Springs.  This time we decided that we wanted to be right in the middle of the action so I booked a room at Planet Hollywood.
I decided to book an early flight so that we could enjoy the whole day in Vegas.  Perhaps this wasn't the best idea, getting up at midnight to get to the airport is no fun.  Our flight was on time and went off without a hitch.  We landed in sunny Vegas and even got an early check in.  Awesome start!
We hurried up to our room to freshen up.....and this is where things went astray.  What a dump!  The room was super small and really dark.  The windows were so filthy we couldn't even see out! It was a beautiful sunny day, but there was no place to sit outside.  After all, they do want you in the casino spending money! Tim and I looked at each other and almost simultaneously decided 1 night is plenty.  I was able to change our reservation in Palm Springs.
  After breakfast and a bit of shopping we hit the highway for what we understood was a 4 hour drive.  Well, for starters we were not told to NEVER take the I15 on a Sunday!  Apparently people from California love to drive to Vegas for a weekend of fun.  After sitting in slow moving traffic for almost 2 hours we were finally our of Primm.  Smooth sailing from there?  Not so much!  What was initially a fun drive in the desert soon became taxing and frustrating.  It truly felt like we were on the road to nowhere! Despite asking for directions and being on the road for 4 hours we were no closer to Palm Springs.  Tim asked me if I was set on getting to Palm Springs or would I be willing to stay somewhere else for the night.  Hell!  That dump Whiskey Pete's in Primm was appealing at that point! After getting orientated and hydrated we decided we were going to Disneyland!  Well, Anaheim, not Disneyland people in costumes creep me out!   I found a reservation for us and after 8 hours on the road we finally made it.  After a relaxing dinner it was time for a good nights sleep.  Now our perfect vacation will begin!  Well, not so much.  At 5 in the morning I woke up throwing up and feeling just terrible.  I was starting to feel like our trip was doomed!
When we decided that we were going to end up in Anaheim I contacted my friend Julie.  I had met Julie on Facebook in a group for adults with neuromuscular diseases.  We realized that we had a lot in common and became Internet age pen pals.  I couldn't wait to meet her and had made lunch plans with her for our first day there.  No stomach flu was going to stop me from meeting Julie.  I was going to lunch whether I could eat or not!
Have you ever met someone that you felt like you have known your entire life?  That's what it was like with Julie.  Sometimes it's awkward meeting someone that you have only written to.  You know, those long moments of silence when you struggle to make conversation. It was not like that with Julie.  Conversation flowed and despite being sick, I had a wonderful time.  As Tim and I decided to stay in Anaheim for 10 days, Julie and I made plans to meet again.
I'm blessed with many wonderful friends who I love with all of my heart.  What is special about my friendship with Julie is that I feel like we truly get each other.  We both live with spinal muscular atrophy and share many of the same struggles. Not only that, we share the same love of shopping.  I believe that everything happens for a reason and we were meant to get lost so that I could meet Julie.
What was striking about our trip is that it felt like we were coming home.  There was nothing that we didn't love.  It felt like we were settling in, which we never feel in a hotel room.  At the end of every trip, I am ready to go home.  I miss my dogs, my home and my own bed.  Although I missed my dogs, I was sad to leave.  I'm home now, but I feel homesick for California.  We have already booked our next trip for Christmas.  This year we have been asked to spend Christmas with Julie and her family.  I can't wait to return to what feels like my second home.
Xoxo

Innocence Lost

When 9/11 happened I was absolutely devastated.  I could not fathom the tragedy! There was so much death and destruction.  As I have been so fortunate to live in Canada I has never seen anything like that.  I didn't know where put it. I stayed home from work for a week glued to the TV waiting for the next shoe to drop.
Flash forward 12 years and there's another terrorist attack. Yesterday two bombs went off at The Boston Marathon resulting in 3 deaths and numerous injuries. Just as I watched the tragedy of  9/11 unfold on CNN, I watched The Boston Marathon tragedy unfold on CNN.  Once again I was horrified that some one would do this.  What was supposed to be a celebration of athletic achievement was a day of  devastation.  It was different this time though.  This time I was not surprised. Oh there's another terrorist attack, not surprised.
What bothers me as much as the bombing is my lack of surprise.  When did I become so jaded?  I still believe in the good in people and am not a total cynic.  People can be good, they chose not to be.  In light of The Boston Marathon I have realized that 9/11 has changed me forever.
Xoxo

What Would You Do?

Yesterday I went on a shopping adventure!  I was off with a friend to find her the perfect dress for her son's wedding.  After several hours of trying on dresses it was time for a rest.  We headed off to the food court for a rest and a snack.  When we were sitting at our table a man approached us and asked for "money for food".  We advised him we wouldn' give him money..  He went from table to table and was given a soda from a food vendor.  As we were leaving I noticed that he was at a table where 2 young boys sat.  He was hustling them for money.  I noticed how uncomfortable they were and felt compelled to intervene.
I told him to leave, but he continued to ask the boys for money. His eyes were glazed and frantic.  In my opinion it wasn't lunch he was jonesing for! He finally noticed my presence and became combative.  Thankfully after tossing some salty language at me he left without incident.
What troubled me is that the food court was full of adults.  Surely I couldn't have been the only one who noticed? What if this was a life threatening incident? Would anyone help?  Tim and I love watching "What Would You Do" and are appalled at how people can stand by when someone else is in trouble.  Granted, we fear these situations and worry about our own safety which is totally understandable. If the man had a gun, my reaction would have been different, but would still call for help.
My friend was concerned that I intervened.   She accurately pointed out that he could have taken a swing at me or robbed me.  Let's face it, physically I'm vulnerable.  Despite this, I would do it again.  As I was leaving the mall I saw the boys again and they thanked me for helping me out.  Their relief and gratitude made my day.  Maybe I intervened because let's face it,  helping others is an awesome rush!
xoxo

The Reinvention of Laurie

It's been a few weeks now since I have "retired" and I am in the midst of creating a new life for myself.  This is no easy task!
Now that my obligations as a Case Manager are over, the world is full of shiny possibilities.  I can truly spend my life focusing on saving animals and flexing my creative muscles. I have begun to seriously pursue getting a service dog.  Now how to bling up their vest......
The onus will be on me to plan my days and make them productive. I have begun volunteering with hart (humane animal rescue team) as a donation coordinator.  My first order of business has been securing donations for our June silent auction.  I am delighted with the support we are receiving from local business. It's exciting working on something that means so much to me.
This wild ride has just begun!
Xoxo

The Most Precious Gift

She's losing her words. I called this morning to check in. When I asked her what she was doing she replied "wiping things". "What things" I asked. After a pause I could sense her frustration. Awkwardly she replied "the big black thing in the kitchen."
Over the course of the last year, I've watched her change and fade away. Initially, I enjoyed the change. The woman who was cruel and hateful was soft and sweet.  Instead of constantly demeaning me, she wanted into my life. Everyday she will call and ask "do you need any help today". In truth, her "help" is often a hindrance. Prior to Alzheimer's cruel hand grabbing hold of her mind, she was immaculate. Now she will forget to wash the dishes or the laundry with soap. As "helping" is now so important to her I will trail her with a watchful eye.
She was rarely patient or kind with me. I had to leave the home that I grew up in to escape the cruelty that was my childhood. Now the tables have turned. Although my body is weak, my mind is strong. I too could be cruel and dismissive in her time of need, but I can't. Time is now short. I am unable to erase the pain of the past, but I can now build a relationship with this stranger who is my mother.
The holiday season was never much of a holiday for me. There was always stinging words, stress and hurt feelings. Last year we did what any sane and financially secure individual would do, we flew to Mexico on Christmas.
This year was different. Tim had pointed out all of the changes that are taking place in mom. Its hard to say, but this is likely as good as she ever will be. 
Because of this, we opted to hold Christmas dinner one last time.  As opposed to the stress cooking a huge meal puts on Tim, we decided to cheat and have it catered. This decision was scorned by my sister.
Our relationship has become increasingly tense and complex. I always feel as though I have to justify myself to her.  Over the last year I have experienced a dramatic decline in my strength and function.  Sadly, this has left me unable to work and unable to participate in my previously packed social schedule. Instead of concern, she meets me with scorn if I am unable to go over to her place or go for dinner. Christmas Eve resulted in an argument and hurt feelings. She invited me to join her and our parents that evening for takeout Chinese food.  As I have to rely on Tim to help me start my day before he goes to work, I must rise everyday at the ungodly hour of 3:30 am. 
Instead of accepting my explanation, she simply told me she is not interested in how I am doing and she only asks so I don't get mad. 
Initially I was angered by her reaction.  "How dare she treat me like this?". "Doesn't she realize how difficult this last year has been?" I then remembered someone who I used to know who also had spinal muscular atrophy. She went through a period of time where she experienced a dramatic decline. Instead of showing the compassion that I should have, I was dismissive of her difficulties. I always thought that she was awash in self-pity and simply didn't try enough. Behind this was fear. Fear that this could happen to me. Fear that I was looking at my own future. She is no longer wish us and I wish that I possessed the maturity at the time to face my fear. This is why I am no longer angry at my sister, perhaps she too is afraid.
Despite the difficulty that the holidays bring to me, this year I received a precious gift. I received the gift of reflection and compassion towards others. Somehow I received the insight to look beyond what is in front of me to see what is inside others. For that I am grateful.

Hope is a Butterfly

Today I met up with someone who I used to know, me! When I awoke this morning, it was different. Like a beautiful butterfly exemplifying happiness and strength. I couldn't reach out and touch her, but I could see her.
My battle with the asshole named SMA will never end, this is true and I accept the challenge. The cloke of dark depression that was and still is impeding my attack is lifting, ever so slightly. 
Yesterday was the most near to perfect day that I had in a long time.  In 2005 I decided that it was time to step it up in the beauty department, so I chose an up-scale salon. At this salon, I had the pleasure of welcoming Angela into my life. Her genius and creativity gave me the style I was looking for! More importantly, I made a dear friend who is now one of the most important people in my life. I love her dearly and value her friendship. Yesterday she came over to my home for my monthly "grooming" appointment.  As usual she did a fantastic job of my hair and made me feel like a million bucks. More importantly, I was able to spend time with someone with whom I have mutual support and caring. It makes an amazing difference to have friends who truly understand and do not judge you. I am truly blessed to have Angela in my life.
Following my beauty session, Tim and I had plans to join a group of wonderful people for dinner. This made me afraid. It has been months since my body has allowed me to follow through with evening plans. I have been an epic failure in this department as of late, saddly I always have had to back out because I simply wasn't able. Obviously this led to incredible self-loathing.
With all of this being said, last night was different! I donned an outfit that reflects my unique sense of fashion and did it! I enjoyed the company of several wonderful people. Although I was still in a great deal of pain, I was alive and free! I was once again in the fold! 
Today I feel a new beginning. A beginning of hope and joy. That beautiful butterfly is still out of my reach, but not for long.