Staying Sane: A flare-up

I swear the mental battle with this disease is harder than the physical one.  It takes so much mental effort to mange the pain there is little brain power left over to deal with the rest of life.
This is most difficult during a flare-up.  A flare-up is a term used to describe a sharp increase in symptoms that last for a period of time.  Typically when I have a flare-up all of my symptoms increase but most difficult is the pain.  When this occurs I am unable to walk at all, something I have become increasingly good at inside my home, and in turn this leaves me stuck inside alone.  This then becomes a true test of my strength and mental health.  I know both from professional and personal experience that isolation can have a detrimental effect on an person's psyche.  This last flare-up was the toughest test I have experienced yet.
It was starting to show signs of spring, not like the past few years here in New England where it went from winter to summer in a day, but the real deal.  I was so excited to begin a new season of sports with the boys.  It had been a long tough winter and I had been holding this image in my head for months.  Sitting at the field with a blanket and sunglasses as I watch them enjoy being outside again.  I was able to get in a few games before the flare-up started.  I was stuck in bed for over a week and was furious I could not get out of the house.  I was angry that my body would not keep up with what my mind.
I was fortunate that I had enough support that not one day of school, not one game nor one practice was missed.  I was able to do homework with the boys in my bed, friends came to sit with me and my husband held down the fort.  In retrospect it is easy to see how lucky I am and stay positive, but when in the grips of it there were only glimmers of a brighter day.  I am also fortunate enough to have learned along the way to have faith that "this too shall pass."  Having said that, it was one of the most difficult things I have forced myself to do.  That is why I am writing this blog today.  I know how hard it can be to hold on to others when you cannot see through the darkness, but you must.  It may seem an impossible undertaking but with the help of others you can make it through.  If you feel lonely reach out.  This world is full of people and most of them good.  Sometimes asking for help can seem an unobtainable feat in and of itself, but if you have just a little faith in humanity you might just find I am right about this one.    

Asking for help was something I really struggled with, I enjoy being the one helping others not the other way around.  Unfortunately I spent many lonely times while I tried to manage on my own.  Asking for help does not make you weak.  Being too afraid to ask and not trying to reach out will make you weaker in the end.  If you are battling something in your life that is bigger than you please consider my words and reach out. 

Psychological First Aid: A personal experience

After the evens this past Monday at the Boston Marathon I have been repeatedly reminded of my training for the Trauma Response Team. This team is comprised of various mental health professionals.  When there is a traumatic event the team gets called in and they provided Psychological First Aid to those in need.  I recall I studied hard because I knew when the day came it would be the real thing and I would need to rely on my training.  Well the day has come for so many and I have to say I am incredibly impressed with all the people of Boston.  This was a spectacular array of responders, from the trained police and EMTs, to individuals who had just completed a marathon, including men in full military gear.  It was heart wrenching but at the same time we witnessed the greatness of so many as they cared for their fellow humans.  The tremendous response saved many lives and gave us an example of who we should aspire to be in this life.

My husband, sons and a friend were at Fenway and made it onto the Green Line before the explosions occurred, they were on the train but did not feel the blasts. I was unable to attend the game (not because of the wheelchair) but was watching from home and my husband would text me pictures, as to be part of the day’s activities.  When I saw it on the news my heart sank.  He had just texted me a picture of mile marker 25.  It would be very likely that they would walk over after the game and cheer for the runners as they crossed the finish line.

They were still around mile marker 25 when they heard the news.  Luckily they had parked near his old office and could get to their car and out of the city before they closed down the train.  I was calling and texting but could not reach them on either cell phone.  Finally when my husband was a little further onto the Mass Pike I was able to get through.  My husband answered the phone, “Ah-oh, I guess Mom saw the news.  We are fine, on the Pike and headed home.”

I had such complex feelings at that moment.  I guess I would say relief and guilt were predominant.  However, that wouldn’t compare to the emotions I would feel as my son grappled with feeling guilty.

How do you explain to your eleven-year-old that it is okay that he is safe and fine?  This was a surreal experience, in the true sense of the word.  I said and did all the things I had learned and was able to get to healing and moving on.  Yet I can’t help but shake that feeling I had when I was holding him as a newborn on September 11, 2001.  His world will forever be changed.  Then I refocus on the lives of those who will tragically never be the same.  My heart breaks for them.  I had just a quick glimpse into their world when I could not get in touch with my guys.  This was the most anguish I have ever experienced.  I cannot even imagine what the reality of that would feel like.  I pray I never do.

I know a bit about terrorism from grad school, I actually had to take a course titled Terrorism.  The whole premise behind it is simple; terrorize innocent people for some gain on the part of the terrorist.  This is a fact that we as Bostonians, or Americans, will not tolerate.    The only way they win and get their gain is if we become terrorized.  Fortunately we are much tougher than that, hence the Patriot’s Day holiday. 

I have no doubt that next year’s event will be bigger and better because that is how we fight back against this weapon. 

If You Don’t Laugh You’ll Cry

It has been some time since I last posted to my blog and much has happened in my life.  I have unfortunately lost some functioning again and need the chair more often than not these days. 

I went for my evaluation at outpatient rehabilitation and received the referral needed to get back into the pool for aquatic physical therapy.  I was not surprised at my functioning level, but there were a few times that she was pleasantly surprised at what functioning I did still have.  She was right after all.  At one time walking again did not seem possible with the amount of nerve damage and I can still hear the echoes of the doctor’s words who first told me so.  

What a great feeling though, she was pleased with what I could do.  This gave a great surge to my optimism and thus my strength.  This surge was much needed.

Following this my sister came into town so we could attend the wake of a friend’s mother together.  I drove, I can still do that physically, however I did go in the complete opposite direction.  After many anxious moments in traffic, snow and rural darkness we did eventually find our destination.  That is when things went down hill.

After circling the nice big old funeral home three times it was still unclear where I should enter the building.  After a short discussion we decided that she would go in and ask how does one enter the building if they require a wheelchair.  She gets out, hikes down her short skirt, brushes herself off and walks toward the front stairs in her two-inch pumps through the snow bank.  About one minute later she is headed back to the car shaking her head.  She opens the door and as she is sitting down she says, “we have to go around back and there is a door where they bring the dead bodies in, we need to go there.”

I ask her to repeat herself and she acknowledged my confusion, stated go around back and we will follow the smell of formaldehyde.  We pulled around and I parked in front of a three-car garage.  It was dark with very little outside lighting.  We were discussing where the door might be when all of a sudden one of the garage doors opened.  A man in a suit appeared and stated that we could follow him.  I wheeled between two hearses and we headed for the back of the building.  As we approached the rear of the building the man took a left and opened a door.  He gestured that we enter and as we did I noticed on the wall in front of me was a Hazardous Materials sign.  In big red letters was a warning about formaldehyde poisoning.

To my left was a rudimentary style lift that was used to bring the bodies up to the viewing area.  He again gestured, indicating that we get on the lift.  I carefully rolled myself onto the lift, not sure where to stop because there were no guidelines or security modifications.  After all it was not made for the living.  The whole thing felt rickety and as the three of us slowly went up, my sister asked “So do you have to do this often?”

The response, “All the time.”

As I sat pondering his statement the opening to the viewing area came into sight.  There was no more time to think about this, it was time to focus on our friend and her enormous loss.  We stayed until it was appropriate to leave and give the family some time alone. 

My sister went to find the funeral home attendant because we had no idea how to get out of the building.  The two of them returned and I followed them back into the other room.  He removed several chairs away from what appeared to be a wall.  He opened a door to revel the lift we had come in on. 

As I rolled back out toward my car past all the inner workings of a funeral home, I began to process what had just happened.  We got in the car and headed somewhere we could get a good meal and catch up.

As we pulled into one of my favorite places in Quincy to grab a great meal and headed for the reserved parking, I had to stop the car.  I could not believe my eyes, there have been several times the spaces were full but not like this.  There in the three reserved spots for the disabled was the snow that had been plowed from the parking lot.  Outraged we decided to park illegally and go in for dinner.  However, the wait was longer than our stomachs could handle so we headed somewhere else, my new favorite place to grab a great meal.

We pulled up and right out front we found a cleared reserved spot.  She went to the back of the van and in her high heels all 120lbs of her pulled my wheelchair out and she brought it to me to put together.  As I wheeled up the ramp someone opened the door and brought us right to a table.  The place was nearly empty but we already knew the food was great so it was just fine with us.  I love it when there is someone there refilling my water glass as needed.  When you talk as much as I do you go through a lot of water.

We stayed and while enjoying our meal discussed the evenings highlight, our scary elevator ride.  We talked about how normal we were about it, like this was everyday practice for me when entering a building.  We just went along with him and used our best manners.  We behaved as if we did not want to embarrass him.  We also talked about how he should be embarrassed.  We talked about the spooky back room and the unorthodox handicapped entrance.  The more we talked the more we laughed about life and enjoying the good it has to offer.  As we laughed she all of a sudden got serious and said, “It is good you can laugh. If you don’t laugh you’ll cry, right.” 

I agreed and toasted to her thought.

                                                                          Forgive, O Lord, my little jokes on Thee,

                                                                          And I'll forgive Thy great big one on me.
                                                                                  ~Robert Frost, "Cluster of Faith," 1962