No Matter How

Its Sunday evening, September 2, 2018 21:39:40 and all is well in my chamber. Today was a good day. Yesterday was not so good. Seems the way things are in the TBI world. We can have ok days and not so ok days and we can have bad days too. I have learned a big lesson about life….To Go With It No Matter How The Day Is!  Yesterday I had difficulty lifting my head from the headrest on my recliner. My head hurt so bad and my neck just didn’t want to be the support it was designed to be. Miserable and in pain, intense pain.

D went to the airport for Mom’s arrival this afternoon. I stayed at home while our neighbor was putting in the plumbing on our new kitchen sink. It is so good to see my Mom. Her 90th birthday is this coming Friday. I bought her a tiara to wear! I love her so much. Thank you Mommy for choosing to celebrate your special day with us!

This dive is a bit different. I did not put on my cool vest. I am pressing my back against it. I do not have the cool towel wrapped around my head. I have it rolled and at the back of my neck. I do not have my personal fan because I forgot to bring it in. I did bring in some bars to chew on and a cold glass of pom juice to drink. It is a bit warm but I am not going to fret. I ordered a few cold packs to bring in with me. I will let you know how they do in making the air in here more pleasant. I put peppermint oil on my ear lobes and neck just as Ginger recommended. And, I feel as if I could take a nap. That’s awesome. It means that I am becoming more comfortable with these dives every time I am in here. The psi is steady at 1.3 and the valve is not too loud today. One of the things that I also tried today is opening up both windows in the room and turning the ceiling fan on high and letting the chamber cool before I got in. I am pretty sure that it helped a bit anyway. Oxygen is on and I will only use it during the dive itself. I will not begin it until the pressure is where it needs to be. My left ear is aching a bit but not terribly. O, I realized that I need to put lip gloss on before the dive or my lips feel really chapped. It is so interesting how well I have learned to adapt to this new activity.

I vividly remember the first year following my fall at work. The physical symptoms were overwhelming. I remember my physical therapist asking me, “So, what did you bring me today?” In other words, she was not able to keep her treatment plan and that frustrated her a bit. She did try a number of therapies that mainly made me feel worse and never advance me to any degree of recovery. My speech therapist and occupational therapist did all that they could and felt that their knowledge and expertise had been exhausted so they discharged me. I loved seeing them because they helped me recognize the deficits I had and helped me challenge myself which is really good for an overachiever like me. My primary care physician learned a lot about concussion/TBI with me. Until my work comp cut me off it seemed like a broken record of filling out a concussion symptoms record and checking my balance and physically examining my forehead and temples that were so sensitive. And then there was a counselor who would call me and ask me about my pain level and motivation. Once work comp received the report from an MRI seven months following the fall that read in layman’s terms: softening and scarring of the frontal and temporal lobes they turned into monsters. It was terrible. They cut me off from all treatment and I was left to figure out who and what and where and how my life would be lived out without the help I so needed.

I am nearly 2.5 years post-brain injury and I have taken the reins. I am now in control of my future recovery. I pick who I want to see for the lingering symptoms and continued troubles that I face every day. I researched the best and most innovative treatments for TBI over the year + that I waited for things to settle enough to be in the place I am in now. I think about all of those who are stuck because typical medical treatment is not enough for them to advance. I hope to one day be in a position of advocacy for TBI survivors and their families.

There was a precious time in my life when I was a food bank director. It was a ministry at our church in So Calif. I would load my truck with food from a centralized bank and provide nourishment to many individuals and families. Our food bank gave out tons of food and non-perishables and it was the thrill of my life to assist those in need. One day I received a call from a mega-church in the area stating that they had x# of subway lunches for me to pick up and distribute. How awesome was that? One church helping another church feed dinner to multiple families! And then there was an early evening call I received from a local bakery. They had an over abundance of baked goods and they had heard about us being able to distribute food quickly. Again, our truck was loaded with breads and bagels and tortillas and donuts and cakes and cookies. My assistant and I drove to a barrio close-by. We parked our truck and honked our horn. It was such an overwhelming experience. Every item was gladly accepted and the children were singing. It still is a very special memory.

Why did I share this? Because No Matter What I will push myself to recover. There are other amazing opportunities for me to touch and bless and be a part of. I have wanted to be the Suz I once was but I am convinced that going backward is not the answer. I must work toward to the goal set before me. No Matter What I will accept what that day brings me and I will embrace it. Even if it is a day where I can’t do more than pray for another person that I know who was crushed by life’s troubles or call a friend who I haven’t seen or heard from in a while. On the ok days, I will put a leash on my Little One and walk over to our son’s house to see of our grandchildren want to walk with me to the park. Or I will call a friend and see if we can have a lunch together either at my house or downtown. No Matter What I am going to put one foot in front of the other and walk into the next moment with wonder and hope and delight in my heart. No Matter What I will cry when I need to and even scream if I need to and journal if I need to and do something that might stretch me because I need to get out of the crappy feelings I am in.

No Matter What I will love myself! This is who I am today. This is where I am today. I am fine with it. I did not choose it. My NOW chose me but I am responsible for the reality I live in NOW! It’s not easy. Its down-right frustrating and depressing and awful if I let NOW define me.

Guess What? I’m in a new NOW now! I am perpetually living in NOW. Choose to live in your NOW with me. I would like that! See you tomorrow morning for pumpkin latte,  chocolate chip scones and eggs scrambled with fresh veggies out of my garden.

No Matter What

Suz