Monday, May 3, 2010

House Arrest

Once again, I am on house arrest. I lost my license, due to medical, mid-April. The loss of freedom is immense and the isolation suffocating. I had forgotten just how difficult it is to try to be normal when I am not allowed to drive. Perhaps my greatest loss is not being able to drive my kids to and from school. It is one of the few acts of normalcy I had as their Mom. And to completely rely on others for the boys' rides, the market, my plethora of doctor appointments, errands, picking up meds, you name it. It absolutely crushes me to have to ask for help again and on such a large scale.

The wonderful and affirming part of my current house arrest is the incredible friends who organized my life and claimed their days to be my personal taxi. I asked Steph if she could provide school rides for John Paul (She drove him every day last year). Next thing I know, she has my schedule covered too. Let me reiterate. Not only does she secure the kids' rides to and from school, but she secures commitments from other school moms to cover my rides. Incredible. But those of you who know Steph won't be that surprised.

A special shout-out to these generous Moms who didn't ask why, only when and where. It overwhelms me to realize that we really are not only school moms together but friends. So Steph, Lisa, Bridget, Michele, Liz, Ella, Mrs. Barnum, Emily, and Mia,and anyone else who may be on the back-up list, once again you have saved me. Thank you.

My special bus application is pending. Undoubtedly it will be helpful. However, the kids are not allowed on, so it will not help with anything that may involve the boys. (Did you really think I was about to say that I was hoping to take them to and from school in the bus????!!) Anyways, it can take up to two hours to get to your appointment, and quite frankly, it will be emotionally excruciating to take that next step.

I find it interesting how difficult it is to have to receive the help. And I didn't even have to ask for it! It is one thing when you need some short-term help. But my need seems to keep going, and going, and going. It is also hard to recognize that the same people who are at the ready to help now have also helped in the past. A sort of double-dipping, if you will. I have been told in very firm, and no uncertain terms, that I must learn to accept when offered. And that my turn will come to give back. I have also received hints that one should graciously accept when others step forward to give of themselves. I am so grateful, yet embarrassed at the same time. I honestly thought that by now, it would be my turn to help others and to pay it all forward.

Despite all the incredible help there is still a part of me that feels like all that is missing is the chunky ankle bracelet. Because I can't go about my business alone, I feel very bare that others now know every little bit of my business. Does that make sense? I have been hiding again since Seattle (duh, like you hadn't noticed I was up to my same old cocooning tricks) and then suddenly it's all back in the open to an extent.

I have lost the ability to communicate what I am trying to say. And this too, is nothing new. Just getting worse and worse. My concentration continues to decline and my memory gets worse and worse. Add to the mix some confusion, and you get Sally.

As much as I would like to sign off now, the big pink elephant is still in the room. And if I am going to try to make a comeback, I might as well start now. But ugh, the truth can be so hard! And often it seems like explaining what is going on now is difficult because I didn't share what happened then. So please be patient with me as I try to explain things as best I can without going back to March 8, 2010, from when I last posted about remission.

On April 15, my oncologist, at the direction of Neurology, informed me that I am no longer able to drive. Thankfully, I was allowed to promise that I would not drive and at this point, because I am being 100% compliant, State Licensing has not been formally contacted. Knowing what all is at stake, I made my promise from deep in my soul. I have little left to offer than my word, and my word is true. If Licensing were to be contacted, I would legally be unable to drive for at least six months after I am found to be on a successful treatment regime. Clearly, it is in my best interest to keep the promise I have made, albeit a very heavy one.

Okay, the elephant is still there. I have experienced several "episodes" of yet undetermined origin and definition. I have called them seizures, as that is how I would describe them. There are some other possibilities now on the table, but a neurological cause would seem the most likely. So until I complete the neuro tests and see the neurologist and get cleared to drive again, here I am. (It is a very long story why all of this is taking so long but unfortunately my life is determined by their pace, not mine. SO FRUSTRATING!).

However, when I had my original Neuro consult, the doctor had told me that I could still drive, at least until we knew what exactly was going on. But that doctor quit without notice and the new neurologist adamantly disagreed. But I had worried about whether driving was the "right" thing to do. Several of those close to me had broached the morality of continuing to drive. But I so didn't want to give up my freedom. Of course, having had another seizure in the meantime, I could easily agree that loss of consciousness does not make me a safe driver. Not for me, my kids, nor for you. So while I accepted it logically, I didn't want to accept that emotionally. And being able to feel it coming, I tried so hard to convince myself and others that I was still in control, that I could pull over in time. I am so damn stubborn but at the same time, I am fighting inch by inch, to get my life back.

Hopefully you are able to see through all my rambling that yes, I could have just written "I lost my license." and that would have covered this topic. But it really is so much, so much more than that. It takes another piece of me away. I am struggling to figure out who I am. I am grieving the loss of who I was, to accept that I will never be that me again. Yet, it also tangibly reminds me of how blessed I am to have such good people in my life, who want to continue to give despite in several cases, struggling with their own life issues at the same time.

One day at a time, right? But all my "one days" are blurring and my energy for all of this is waning. I am tired of living in Sally Land.

3 comments:

tagskie said...

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Denise said...

I was thinking of your "House Arrest" blog and the wonderful angels you have in your life. It reminded me of a line in a song from Sound of Music..."somewhere in my youth or childhood, I must have done something good"...You have always cared about other people and their feelings and have been there to help...now it's your turn.

Anonymous said...

Hopefully Sally land is just a step you have to go through to become whole again. I can't imagine how difficult things are for you, and I check your site regularly in the hope that it will all begin to get much, much better for you and your family.