ABI - MY JOURNEY

It has been a funny summer, not funny haha but funny strange. Everything in the garden was 2 to 3 weeks behind. There were virtually no June bugs but the clouds of mosquitos were vicious. Even the momma Raccoon, Rockie, kept her babies out of sight until they were only slightly smaller than her. Every season has its challenges, expectations and triumphs. And so followed my summer.

After my March of Dimes presentation to a group of ABI survivors my summer seemed to roll out before me like a straight and narrow pathway. Other than planning for two day visits from our Bermudian son and his wonderful girlfriend, and our dear friends from St. Augustine, Florida, I felt it was a good time to work with my doctor to make adjustments to my medication regiment. No matter how much they tell you it will be a challenging couple of months, I now know you have to personally go through it to understand the disruption these type of changes can cause. Moodiness, increased anxiety, wanting to escape from your family, close friends, even your therapists, the impact of noise, changes in weather pressure… and so on, I felt my days had been turned upside down. Has it been worth it? A resounding YES!

 As we approach fall, a new season of change, I am slowly beginning to feel closer to the me I was in my “New Normal”. It will still take another couple of months of adjustments to my dosages of medications but the difficult moments are becoming shorter and easier to manage. So if you are experiencing changes and challenges, as you move through this ABI journey, it will become easier, believe me, as someone who is going through it now.

It was with anticipation that I looked forward to my final presentation of the Spring Season before taking a summer break. The March of Dimes, in Barrie, Ontario, had asked me to speak about “That Omnipotent Beast… FATIGUE” at their conference for ABI Survivors. Fatigue is something that I know we all face in our daily challenges with ABI and I welcomed the opportunity to explore how my peers dealt with this beast. 

An invitation was also extended to my Occupational Therapist and Speech Language Pathologist to speak at the conference. From a clinician’s perspective they offered various strategies and ABI Resources available to anyone struggling with ABI challenges.  We are working on including those resources on my website, so please keep checking in.           

Of even greater value, to me, was the opportunity to hear others with ABI talk about their experiences, their challenges, their accomplishments… much of what they spoke about was laid out before us with a sense of humour and heart felt emotion. Thank you for letting me be a part of this worthwhile event. It was a good day for us all.

An invaluable learning experience about ABI and its impact on me for my Goddaughter.

March of Dimes Conference

abimyjourney:

Over the past 5 years the majority of my “ME” times away from home have happened on weekends. My husband slowly introduced me to the Buffalo and Rochester areas, the benefit being they are within 2 hours from our home here in Ontario. Throughout this time we have developed a routine that fits with my need to feel comfortable with where we stay, the restaurants we choose to eat at, spa time for me, and shopping at one clothing store chain where I always feel at ease when served.

My husband, Rick, makes the arrangements, books our hotel room, makes breakfast and dinner reservations where needed (a quiet table away from patron and staff throughways) and, if it was a spa weekend, before I learned how to book my treatments online, I would let him know what treatment/s to book for me. If we plan to visit friends when we are down there, knowing my schedule for having rests and not having late meals, he sets those up too.

So with the weekend trip away set, and the itinerary in place, I have time to think about what I need to pack for three days and two nights. No leaving things to be done at the last minute! This dance with ABI has taught me that the best way to pack is to plan, well in advance, what items will make up a complete outfit, including undergarments, and put them all on one hanger to be placed in a garment bag a day or two before we leave. When we get to the hotel room they get hung up in the closet in the order I plan to wear them. My only downfall is that I am a matching purse and shoes person, always have been, so they go in my weekend bag with the toiletries and medication I need. I wish I could travel with one pair of shoes and purse but c'est la vie! 

From the point Rick packs up the car and we head out on the road I know I can go with the flow. Routine, even when travelling or on holiday, is my strategy to help temper the unexpected appearance of ANXIETY into my day, or the encroachment of FATIGUE. When we arrive at our destination I will take a nap while Rick does some correspondence or, because of our familiarity with the front desk staff in case I need assistance, he heads out for some “HIS” time while always remaining in touch by phone. And that is okay, it is both of our time away. And if we are at one of the hotels that has a spa, I have my time being pampered while he goes for a drive around town until I am ready to head back to the room. 

For the trip home the worn clothing are hung back up on their hangers, then are placed in the garment bag, while the weekend bag is refilled with all its sundries. And, even if it takes a few days to unpack them once we get home, that is okay!

On June 12th I will be speaking, in Barrie, at the March of Dimes ABI Conference. I am looking forward to talking to Survivors about the strategies I have learned from my own experiences, those strategies provided by other ABI Survivors, our caregivers, clinicians and therapists, in tempering the impact of FATIGUE.

Then, as I hope you will all do, I will take some time to enjoy the summer and time with my family and friends. My everyday routines will help keep me in sync until I head back, in the fall, in order to continue moving forward with my speaking engagements as I continue down this road.

Bermuda’s Kiskadee.

I have always believed that a person has to be able to breathe in the essence of Bermuda to know you are here. On this trip I have come to learn that it does not have to be true.

I lost my sense of smell as a result of my TBI. During my first time back to Bermuda, 18 months after the accident, I grieved the loss of not being able to take in those memorable aromas that always greeted me when I landed in Bermuda, a combination of the perfume of its flowers, salty sea air, and the musty, earthy scent created by the humidity. Those wonderful smells were always my signal that I was back in Bermuda, my home away from home.

Last week my husband and I flew to Bermuda to celebrate our 10th Wedding Anniversary, my second visit back since the accident. As we disembarked the plane, not having a sense of smell quickly reminded me a hole had been left where smell once played an important function in my life. I am no longer able to grasp how to pull whatever remnants, from memory, of a once strong and viable olfactory explosion that always seemed to welcome me back to the island.

That was until the second morning of our holiday. I was sitting, alone, out on the balcony of our room when I began to feel, see and hear other elemental essences of Bermuda as they enveloped me. They came in the form of feeling the breeze on my skin, my face being washed over by the warmth of the sun shining down, watching twitter-pated sparrows settle on the railing looking for bread crumbs, and listening to the unforgettable calls of the kiskadee’s . These were all things that existed on each of my previous Bermuda visits but which I somehow took for granted. Excitedly, I am now experiencing them in a new and welcomed way.

Instead of focusing on those losses I have been forced to accept as part of this new journey, I have found that there are other ways to help keep those memories alive. It is a demonstration that if we lose one sense through TBI our other remaining senses will heighten. We just have to be open to how our world changes and, by accepting those challenges, be able to change with it.

**THE CHALLENGES OF TRAVELLING AWAY FROM ****HOME**** **

Throughout most of my lifetime Bermuda has always had the feeling of being a second home. Down on that island we are called Bermuda Longtails… because we keep returning. My husband and I are once again heading back there, after a long time away, in order to celebrate our 10th wedding anniversary and to visit with our Bermudian son and family friends.

Preparing for this period away from home will take a lot of planning, scheduling, no last minute, let’s get this done the night before leaving packing, and trying to execute a relatively non-anxiety producing escape from our everyday chores, therapy sessions, and generally complex life at home! It should be easy, right!

Traveling, at the best of times, is not a stress-free experience for most people. And for a person with ABI there are additional stressors creating anxiety and fatigue as we deal with certain obstacles others do not seem as affected by. So, as Rick and I go through this process over the next month I plan to be able to address some of the pitfalls, what worked, identify those things that will need some tweaking, and address anything else of consequence that pops up.

In the meantime, don’t forget to breathe… tomorrow is always around the corner… and if you need some help please let those close to you make their way across your door step.

The Ides of March is fast approaching, and certainly, for me, it can’t arrive soon enough! It has been a long and unforgiving winter, and so I think we are all hoping for Spring’s welcomed arrival, giving way to warmth, flowers, and sunshine.

The ups and downs of living with an Acquired Brain injury have taken their toll on me. From the day after Christmas until now I have had to struggle with the pitfalls of that big Hairy “F” word… FATIGUE. The snow and ice have hampered my ability to get out and about. I have relied on people close to me to pick up items I need. I have been to the community pool twice this winter which is not a good track record. And so my somewhat self imposed isolation has worn me down.

Sadly I am guilty of letting some of my strategies in dealing with ABI fall by the wayside, as I am sure we all have been guilty of to some extent. At least until these past two weeks. I am beginning to feel I am slowly getting back on track. 

Two weeks ago I had high tea with 4 of my sisters. It was wonderful and I felt I was making my way back into the family circle. A week later I had the opportunity to talk about FATIGUE to small group of ABI Survivors. A feeling of exuberance, sharing and joy energized me as we talked about various strategies on how to confront this beast more successfully. Then yesterday I had an outing with my sister and a friend. Companionship, settling back into the relationships I had before my accident, an outing on a sunny day, all helped to make me feel I was entering back into the real world.

And yet I know I will experience down days, days filled with the challenges of fatigue, changes in commitments or support, disappointments caused by unexpected denials or limitations. However, it is a journey as a brain injury survivor we must each take, one step at a time, one day at a time, where ever that journey leads us. Yes let’s take it one day at a time.