Reflecting, Refocusing, and Rejoicing

It’s been over a month since I’ve last posted, that topic focusing on the death of one of my supreme muses, the mighty Dr. Maya Angelou, née Marguerite Johnson.  She adopted my state, The Tarheel State (the only way this Wolfpack grad will acknowledge her Tarheel status, lol), as her home.  One of the things she admonished was the importance of literacy, so that one can record his or her story, so that the world will forever know upon discovery that we were here.  So it is perhaps appropriate that I should take time, having celebrated fifty-one years of life this past 19^th of July, to reflect upon and chronicle a few moments of my life over the past year.  I need to remind myself that I am still here, still have something to offer in this life, and still am a voice in this world (been watching the Different World episode where visiting professor Whoopi Goldberg has the students write their own eulogies).

Feeling like I am at a crossroad, at the age of fifty-one, physically disabled but vibrant in mind, wishes, and ideas, I must admit is kind of scary.  It is also rather depressing and mundane, not being able to do much of anything, trapped in the house all of the time, wishing for hand controls to freedom.  I sometimes get lost in thought, imagining driving myself to the YMCA to use my Silver Slippers membership for some much needed exercise, or driving myself to Nash Community College for the painting, or photography, or creative writing, or basic guitar, or basic Spanish class that I most recently signed up for.  I can even see myself being able to volunteer or work in some small capacity in a school, or start working on renewal credits to keep my teaching certificate current.  June 30, 2018 will be here before we blink our eyes. It is frustrating to think that such lonesome days of longing and dreaming may be my lot for the rest of my life.  I just cannot accept such a fate.  I can’t!

So…  I reflect.  What have I done with the last year of my life? The biggest thing that pops into my mind has been the personal financial goals I have set for myself, the things I have been doing to help myself and my family.  I will not go into great detail, because as my husband is fond of saying, “Everybody’s business ain’t nobody’s business”, lol.  But I have reached my goal of paying off several bills, little by little, a little extra when I could, lifting that drain off of me, which really feels good.  I have learned and continue to try to pare down my wants and whims, to the brass tacks and “that’s the facts, Jack” bare necessities of life, and a few minimal splurges, usually at holidays and birthdays.  For example, we have wireless internet and upper tier cable but forego movies at the theater most of the time.  In the last year, we went to the movies to see The Butler and 42, and before that, I have to scroll way back to Red Tails.  Otherwise, I wait to watch a movie as many times as I want, stopping when I want, on cable.

Vacations are also a distant memory.  One of the best was back in 2008, also remarkable because that was when I finally had a definite name for what was happening to me, multiple sclerosis, July 1, 2008.  I had three days of steroid treatments, via IV drip, back and forth to Greenville daily, with the IV line still in my hand, trying awkwardly not to disturb it or get it wet while in the shower.   But I was happy because I finally knew what was making me stumble sometimes, or drag my foot, or lose my balance—MS, my cruel, personal warden.  Our vacation to Myrtle Beach was exceptionally nice that year.  The following two summers we were able to go back to the beach for good times and a little chillaxing, but since then, we have been on a four year drought.  “Ahhh… maybe we’ll get to be beach bums next summer…”  The reverie winds its way through my mind as I imagine the warm, sea salty air at sunset as I sit on the deck with a cool drink in hand, savoring the long, saved for moment.  Hmmm… I wonder how much to rent a beach wheelchair for a few days?  Convincing myself that the beach is no good because of jellyfish, sharks, and riptides is wearing really thin with me, not to mention Jalen, too.  I think Duke could even stand a day or two of fishing and beach fun as well.

 

I am thankful upon reflection that my health has been pretty good overall.  Had a couple of sniffles, once probably needing to go to the doctor but didn’t.  Not being able to drive myself anywhere is quite limiting.  Duke has been working Monday through Saturdays pretty steadily, and he is my mode of transport.   I just hated to ask him to take off, which I know he would have, and chose to doctor on myself instead, knowing that he would take me to see the doctor if I felt like I was not getting any better.  But God continues to bless me with relatively good health.  While I remain humbled by MS, I rejoice every day that I open my eyes that I am in my right faculties, have a roof over my head and food in the fridge, can grumble profusely but still pay my bills, and still have enough hope to dream of and make plans towards better days.  My house may not be the one I want, but it is a happy home filled with love.  For that blessing, I am most grateful.

As I look forward to the rest of this year, I am refocused on my main goals: adding savings to my secret stash, shopping sales, clipping coupons, and getting the best deals for the things we need for living, allowing for a little fun every now and then; finding something constructive and fulfilling to do during the day to make myself feel more purposeful in the world and less of a burden; putting myself first and making myself an appointment to go to Raleigh and see my neurologist, even if it means Duke has to take a day off of work; continuing to focus on getting my truck outfitted with hand controls; and helping us move to a better house, one more suitable for my adaptive needs.  My initial purpose for my secret stash was to be able to help make Christmas a little merrier this year, but lately I have been giving a lot of thought to regaining my independence and getting my truck back up and running, and ready for me to drive myself.  That may be the best gift of all, not only for me, but also to help shuttle Jalen to more extracurricular activities just like I was able to do for Jordan.  If I can do that, the world better look out!  I can see myself back in the game again, true player for real, doing something purposeful to make myself happy and to help someone else, hopefully in the educational arena.  Closely followed by that is my deep desire for us to get our own house, one that we can truly call our own.

Without feeling guilty, I need to learn to be more selfish and focus on me, and do things that will make Jan happy.  My guitar is still sitting patiently, waiting for me to strum some tunes with the interest and enthusiasm I had when I bought it.  I am still working on that.  I also ordered me a how to manual for drawing, a passion I once had growing up and was pretty good at doing.  My book came today, and while we are out shopping for Jalen’s birthday presents this weekend, I plan to at least get me a couple of drawing pencils, charcoal pencils, a pencil sharpener, and some art gum, which will at least let me get started.  Perhaps rediscovering my penchant for drawing will give me a spark, help me figure out something that I can do with others, make those connections that I long for.  I hope that I can get back into the rhythm of writing, and pull what is floating around in the crevices of my brain onto the printed page in some form.  I plan on asking the neurologist about how to go about getting the hand controls for my truck.  Perhaps that wish can finally become more than a mere pipe dream, and I can begin to feel a little independence and feel like I am truly back again in control of my destiny.  I am smiling now just thinking about the possibilities.

It may seem as though all I have done in this blog is complain, but I really am not trying to sound ungrateful or elicit pity.  Every day I am enveloped in love, both the kind I adore, like when my husband fixes me coffee every morning, and the annoying kind of love that Jalen gives me daily (yes, I am being a little facetious), and that I can’t imagine living without.  Even Jordan brings me joy, as he continues to grow into manhood, balancing college life, basketball, theater, and a part-time, grave yard shift job.   My prayers over him are being answered.  Thank you, Lord!  I am very thankful for life, and am very happy for the love of family and friends.  Even amongst complaint I rejoice, for I realize that I am fortunate that I can still do basic things for myself; albeit slowly or awkwardly, I can still do them.  I am happy that despite all that I go through, I can still see the positive side of life’s situations and still believe that things are going to get better, that something is going to open up for me that will let this black butterfly spread her wings and fly once more.   Thank you, Lord, thank you, Lord! 

Here I stand at a crossroad, a little scared, somewhat confused, but a whole lot of happy, and determined to get back into the game, even if just for one last dance, a final swan song, this time ending on my own terms and in my own way.  Overall, as I reflect, refocus, and rejoice, I realize how bountifully I have been blessed.  My life is not perfect, but it is good.