This interview is about a friend of mine named Ian McDonough This, is His Story. I asked him questions and he gave me some answers and some may have been difficult because of things he may not have known because it may not have been shared with him but a lot of us have those moments where we may not know when someone asks a question we don't have an answer for. With that being said, let's start.
Q, When did you first get diagnosed with Hydrocephalus?
A. I was diagnosed at 3 months old.
Q, Where there any concerns after you were diagnosed and were you born with it?
A. Well, my parents main concern were the physical and mental limitations that they were told I'd have. They were told I would be mentally handicapped and in a wheelchair.
Q. How long were you in the hospital for and did they have to monitor in case there were any signs of seizures or any health concerns?
For this question of their answer they were unsure as they didn't really know. I told them that was okay because for that type of question, I probably have the same feeling of being uncertain if someone asked me.
Growing up did the doctors ever think you would talk?
For the answer to this question they gave me, they mentioned how it wasn't specified to them growing up, and how it could have fallen under the category of mentally handicapped.
What were some of the challenges during school, for you that you faced growing up and have you felt like you overcome some of those challenges growing up?
Walking was very awkward for me growing up. I wore an ankle brace until I believe 4th grade. Up until 6th grade I'd get pulled out of class for an hour to do physical therapy to try and get my walking under control. Mentally things were never really a problem till 10th/11th grade where I suddenly lost my ability to focus. If it wasn't for recent [non hydrocephalus] complications, my walking was fine, and I was even a runner for a while before it happened.
During your grade school years or high school years did you ever feel like kids picked on you because of what you went through or did you have a group kids that understood?
Meaning, did you have friends that understood, and supported you, so that you wouldn't get picked on?
Not specifically. I can't say that anyone in particular stood up for me. However my memories before 5th grade or so may be a little fuzzy, but I think the bullying related to my hydrocephalus issues didn't really happen until high school. I had friends, but I can't really say that anyone stood up for me in those instances.
When you graduated did college for you get easier or was it a little bit difficult and did you ever need more time or help?
I'd say that if went in either direction it got more difficult. I talked to the department in my college that dealt with accommodations for people with disabilities because I needed two things. Extended time and an alternate test site. I never knew exactly why being around a lot of other people made it hard for me to focus, but that seemed to be what happened.
The extended time was kind of a back-up in case the alternate test site didn't take all the anxiety away, and I needed to use it more often than not.
How would you describe your experiences growing up and what you're going through now? Would you say some or all of what you went through growing up is different to what you are experiencing now or would it be different?
Once I hit my teenage years, hydrocephalus didn't even feel like a concern for me. I only had one shunt issue, that being total failure of my VP shunt when I was 13. I'm not entirely sure how, but the neurosurgeon in the ER determined it was failing, and shortly after brought me to the O.R., he checked it again and it was working fine. Now it's more of a concern because I've had two revisions and an LP shunt placement inside of 2 years after going 24 years without a problem. So now there's all that lingering thought of will it happen again? I'd say it's totally different, because for 24 years I didn't have to think about it. Now being older and having gone through a couple difficult complications, I've come to understand that shunt malfunctions can happen at any time.
What would you say has been the best part for you when you found out that there was a group for people like you and did you ever think you would meet others going through the same things you did?
I think the best thing about it is having a group of people who understand what I am going through. My parents understand, but they've never actually lived it. Finding people who have been dealing with hydrocephalus as long as I have [some a shorter amount of time, but the point is the same] makes me feel like I can actually talk about my experiences with people who know how it feels. I honestly never thought I'd find a group like that.
I then asked permission if I could share his name with this and he said of course.
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