Small Milestones

Today is my fifth day in King’s College Hospital, and I finally remembered to ask my husband to bring my ipod with him when he visited. Once he (looking exhausted) and our boys (full of energy) had left, I uncurled the headphone cables excitedly, chose my favourite playlist, and lay back, feeling my heart lift as Jack Savoretti’s ‘Wonder’ shut out the chatter of other visitors and patients (I first typed ‘inmates’ and had to think for quite some time to find the right word to replace it with. A classic Freudian slip).

After eight debilitating weeks I have a final, confirmed diagnosis of spontaneous intercranial hypotention, which is essentially a low pressure headache caused by leaking spinal fluid. Since bed rest and caffeine (conservative but often effective treatments which allow or assist the dural matter of the spine to repair itself) have not cured it, I will tomorrow have a procedure called an epidural blood patch. This involves an anaesthetist extracting some of my blood, then injecting it into the epidural space around the spine, which will hopefully seal the leak. It is a relatively safe procedure that has a high rate of success and provides very rapid results, though in some cases two or three patches are needed for lasting relief.

I have been reading voraciously during my stay here, mostly to keep myself entertained and distracted. For the first three days I was transported into the lives of the many characters within A.S. Byatt’s novel ‘The Children’s Book’, which my mother gave to me nearly two years ago, but I had not yet begun to read. I had two overwhelming responses to this experience – when I first began reading it felt like a wonderful gift I had been saving up, and had only grown in importance through the waiting. Upon finishing, however, I was conscious of a gentle but pervasive awareness that I would never again be able to read for the first time a book my mother had given me. This was particularly special, because almost everything else I have is tied to memories alone – it is all in the past tense.

Thus does life go on, small milestones alongside the path as I continue to adapt to a world that no longer contains my mother anywhere but in my heart and memories, and those of others who knew and loved her. The gifts she gave me will remain with me forever, though their significance will shift and change with time.

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10 thoughts on “Small Milestones

  1. Life does go on and you will be alright. I’m so happy that at least you know what you are dealing with and at least something can be done. Your husband and your boys will be waiting for you when you get out of there. *Virtual hug* 🙂

  2. easy to say harder to experience when our bodies insist we stop. I can’t imagine how hard these weeks have been but I have been gifted so much through sharing your experience. I have seen how much you have grown expanded opened up. maybe that’s the ‘reason’ if there is one for challenges even pain. we are all trees that twist turn bend into beautiful shapes molded by wind rain rock and stone. not straight lines. life is not straight lines. I very much look forward to seeing you soon xxxx

    1. It is always worth being aware of what any experience, however difficult, has taught or shown us. These patterns are so much easier to see retrospectively! I am enormously grateful that you answered my call for help…

  3. Wow, a CSF leak. I had that also. Two failed blood patches, a week in the hospital lying flat on my back the whole time, and the doctor had to resort to surgery to repair the leak. I understand what that kind of headache feels like.

    1. I can’t believe it has taken me so long to reply to your comment, I am so sorry! Wow, you make me realise how lucky I am that the first blood patch worked (I’ve subsequently heard that they seldom do with long-term spontaneous CSF leaks – the doctors telling me know effective they are were referring to those administered quickly after lumber punctures and epidurals). It must have been such a nightmare for you! Hugs xxx

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